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White House Holds Summit on Organ Transplantation

2016; Elsevier BV; Volume: 16; Issue: 8 Linguagem: Inglês

10.1111/ajt.13942

1600-6143

Sue Pondrom,

Organ Donation and Transplantation

Leaders in government, private enterprise, academia and patient advocacy gather in Washington to expand organ donation, reduce transplant wait list With growing national recognition of the need to increase organ transplantation, representatives from federal agencies, private enterprise, the science sector and patient advocacy groups came together for the first-ever White House Summit on Organ Donation, held June 11, 2016, in Washington D.C., to announce plans to invest nearly $200 million to increase organ donation and decrease the size of the transplant waitlist in the United States. John Holdren, MD, assistant to President Obama and director of the White House Office of Science and Technology Policy (OSTP), told summit attendees that “the President believes that we can end the wait for organ transplants because he knows the power of American creativity and ingenuity.” He added that in 180 days (from the summit), “the Administration is committing to provide an update which will outline common-sense steps to reduce the organ transplant waiting list and improve patient outcomes.” We must all do our part to lift up donors, donor families and patients by supporting efforts to shorten the donor waiting list. Together we can improve and save lives by celebrating those who give of themselves, whether as living or registered donors, to provide the greatest gift there is to offer. —President Barak Obama The White House Organ Summit provided a national forum that highlighted the need for more transplantable organs, a critical public health issue, and one that will require a multifaceted approach, says Timothy L. Pruett, MD, president of the American Society of Transplant Surgeons (ASTS). “It is time to take advantage of the attention that the White House has provided to make a significant impact,” he adds. “I look forward to seeing the results of projects announced and others that grow out of the call to action.” Anil Chandraker, MD, president of the American Society of Transplantation (AST) appreciated the mood of optimism at the White House Summit. “The problems facing end-stage renal disease care and transplantation were well defined. We were happy and grateful that the White House was shining a light on the problem and feel that this is the beginning of a process to stimulate real change.” Summit speakers noted that, although 95% of Americans support organ donation, only 50% of those are actually registered. Former U.S. Surgeon General Kenneth Moritsugu, MD, described how easy it was to donate his wife’s organs when she died because she had made her wishes known in advance. However, when his daughter died unexpectedly, he wrestled with the decision. “Knowing her intention would have made the decision so much easier,” he told summit attendees. During the summit, White House officials announced several initiatives designed to help boost donor registration:•Facebook, Twitter, DoSomething.org, Tinder and ORGANIZE (see “ORGANIZE” box, next page) are developing new tools and public advocacy campaigns via social media to achieve one million new registrations and social declarations by fall 2016;•Amy Poehler’s Smart Girls, an online community for youth, will create content and use its social channels to promote organ donation and registration throughout summer and fall 2016;•Donate Life America will launch a social media campaign in summer 2016, to target populations typically less likely to register as organ donors;•The Cystic Fibrosis Foundation (CFF) announced a multiple-year partnership with ORGANIZE and partnerships with organ procurement organizations (OPOs) to increase registered donors and promote organ donation for lung transplantation; CFF also plans a mentoring program to connect individuals preparing for transplantation with others who have received an organ;•Carnegie Mellon University in Pittsburgh and the New Jersey Organ and Tissue Sharing Network will conduct a one-year pilot study to determine whether increasing consent by legal next-of-kin can lead to 3,000 additional transplants per year;•MedStar Georgetown Transplant Institute is partnering with Donate Life America and ORGANIZE to develop a free smartphone and tablet app for individuals to designate healthcare preferences, including organ donation; an app specifically for kidney patients will be developed with prize money from the U.S. Department of Veterans Affairs and the American Society of Nephrology, and Johns Hopkins University in Baltimore and ORGANIZE will launch a second version of a living donor app to help patients find kidney or liver donors; and•Walgreens and Donate Life America will use targeted communications to pharmacy customers to register via the online Donate Life Registry. Several announcements involved research efforts to increase the number of transplants in the United States by 2000 a year. The largest financial commitment came from a public and private funded effort to develop a $160 million Advanced Tissue Biofabrication Manufacturing Innovation Institute (ATB-MII) under the auspices of the Department of Defense (DOD). The Institute will focus on tissue and organ repair and organ preservation. “The ATB-MII is the first manufacturing initiative in the healthcare or biomanufacturing field,” says Wendy Dean, MD, medical officer for the Tissue Injury and Regenerative Medicine Program Management Office of the U.S. Army. She adds that the initiative is expected to achieve financial self-sufficiency within a seven-year period of performance. The DOD also announced $7 million in awards to small businesses working to advance the science and technology of organ and tissue preservation, and six new Small Business Innovation Research awards up to $7.8 million to expand organ availability by developing novel strategies for preservation and reconstruction. In November 2016, the DOD will release a fourth call for proposals for the Reconstructive Transplantation Research Program. The AST, ASTS, United Network for Organ Sharing (UNOS), and the Laura and John Arnold Foundation have partnered on research grants to study transplant center performance. The goal is to increase transplants by reducing undue risk aversion and incentivizing innovation, while maintaining patient safety and care. The AST and ASTS also announced a partnership to create the Transplant Therapeutics Consortium, a three- to five-year research effort to increase patient outcomes and graft survival and to reduce the need for retransplantation. Additionally, AST will fund $1.2 million in grants this year to support innovative research that could double rates of long-term survival. UNOS also announced two studies: one on the feasibility of collecting new information and another on modifying existing transplant center performance monitoring and assessing best practices to increase utilization of moderate- to high-risk kidneys. The OSTP, in collaboration with the Health Resources and Services Administration (HRSA), will bring together researchers from diverse fields for an “Organ Datapalooza” this year to explore ways to link transplant data with various databases. With the National Institute of Allergy and Infectious Diseases, Johns Hopkins University School of Medicine will design and launch a study of HIV-positive to HIV-positive organ transplantation. And, more than 30 organ transplant centers announced a collaborative study to identify best practices for difficult-to-transplant kidney patients. In collaboration with AST and ASTS, HRSA announced a coalition with patient organizations and other stakeholders to support living donors and ensure appropriate metrics are in place to help more patients receive deceased-donor transplants. The coalition also will provide education and resources for potential living donors, address financial and other barriers to donation and ensure that living donors have long-term medical follow-up and access to care. In fall 2016, HRSA will release findings from the Scientific Registry of Transplant Recipients on the feasibility of establishing a national living donor registry to obtain information about long-term health and socioeconomic outcomes of living organ donation. Additionally, HRSA plans to release the findings of two studies on the feasibility of collecting new information (metrics) and modifying existing performance monitoring. It is time to take advantage of the attention that the White House has provided to make a significant impact. —Timothy L. Pruett, MD, ASTS President We were happy and grateful that the White House was shining a light on the problem and feel that this is the beginning of a process to stimulate real change. —Anil Chandraker, MD, AST President ASTS, Baylor University Medical Center, the Cleveland Clinic, Fahrenheit 212, Mount Sinai Health System, ORGANIZE and the University of Chicago Medicine are launching an anonymous, nondesignated living donor database. With Donate Life America, the University of Pittsburgh Medical Center and the Children’s Hospital of Pittsburgh will reach out via social media to increase the availability of living donor organs. Johns Hopkins is working with the National Kidney Foundation (NKF) and Novartis to launch the Live Donor Champion Program, developed by Dorry Segev, MD, PhD, to overcome common barriers to finding a living kidney donor. Northwestern University will tailor a Live Donor Champion model for this program. In kidney transplantation, the NKF will launch a nationwide campaign, The Big Ask/The Big Give, to promote awareness of living kidney donation for recipients who have trouble asking someone to consider the procedure. The National Kidney Registry, the largest kidney paired exchange network in the United States, announced a reimbursement program to pay for out-of-state physician fees associated with organ removal from non-Medicaid beneficiaries. Additionally, the Nonprofit Kidney Care Alliance has pledged new programs to increase access to transplant for more than 4,000 patients with chronic kidney disease and end-stage renal disease. Walter Reed National Military Medical Center announced a pilot program to use a deceased donor kidney to initiate a living donor chain. “Our plan is to leverage both the military’s expertise in logistics along with our military share program,” says Eric Elster, MD, chair of the Uniformed Services University of the Health Sciences and the Walter Reed National Military Medical Center, and Jason Hawksworth, MD, chief of transplantation at the Center. “The White House Summit brings transplant to the same level as other areas targeted for innovation in healthcare. We are honored to play a role.” Beth Israel Deaconess Medical Center, Duke University School of Medicine, Emory University, Mount Sinai Hospital, Northwestern University, Temple University and the University of California, Los Angeles have created a Blue Ribbon Advisory Panel committed to establishing a national clearinghouse of educational resources. This will be available in the summer of 2017. With care coordination and shared decision-making tools, the Global Liver Institute, in collaboration with Johns Hopkins, Sibley Innovation Hub and Astellas Pharma, is developing a model for a Patient-Centered Medical Home and Survivorship Program for Transplant Recipients. UNOS has also announced new technology and data tools to increase the number of transplants performed in the United States:•UNet data and applications help transplant professionals recover and efficiently use more organs;•TransNet, to be in use in all OPOs by June 2017, helps ensure donated organs are correctly and efficiently matched;•Electronic data exchange capabilities will expedite delivery of critical and time-sensitive information between OPOs, transplant centers, histocompatibility labs and UNOS;•Transplant centers will receive quarterly benchmark reports to be used as performance improvement tools;•A pilot project will help develop donor profiles for candidates, reducing unwanted organ offers; and•A new technology platform will allow transplant centers and behavioral research scientists to test improvement of the organ offer system. At the end of the White House Summit, Dr. Holdren said, “As you heard from today’s panelists, we are inventing the future…. Today’s announcements will move the needle – increasing organ transplants and reducing the organ waiting list – and we will not stop there.” Founded nearly three years ago, ORGANIZE (organize.org) makes it easier to record donor wishes via social media such as Facebook, Twitter and Instagram using #organdonor or #organdonation. At the White House Summit, the organization’s cofounder Jenna Arnold asked all 58 OPOs to access the ORGANIZE registry, which lists both legal registrations and social declarations.KEY POINTS•White House holds first-ever Summit on Organ Donation, which gathered representatives from federal agencies, private entities, academia and patient advocacy groups.•Agencies will invest nearly $200 million to increase organ donation and reduce the size of the transplant wait list.•The funding will go to research, innovation and other initiatives to promote donation and efforts in transplantation. •White House holds first-ever Summit on Organ Donation, which gathered representatives from federal agencies, private entities, academia and patient advocacy groups.•Agencies will invest nearly $200 million to increase organ donation and reduce the size of the transplant wait list.•The funding will go to research, innovation and other initiatives to promote donation and efforts in transplantation.