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Fact Sheet: Obama Administration Announces Key Actions to Reduce the Organ Waiting List

June 13, 2016

"America's progress in science and technology has countless revolutionary discoveries within our reach... New breakthroughs in treating cancer and ending the wait for organ transplants... That's some of what America can do."

President Obama, May 19, 2016

Every 10 minutes, someone is added to the waiting list for a life-saving organ transplant in the United States. And every day, 22 people die while waiting. Today, the Obama Administration, as well as dozens of companies, foundations, universities, hospitals, and patient advocacy organizations are taking steps to change that by announcing a new set of actions that will build on the Administration's efforts to improve outcomes for individuals waiting for organ transplants and support for living donors. Some of the actions being announced aim to increase the number of people who register to become organ donors, some aim to increase the number of transplants and improve outcomes for patients, and others are focused on changing what might be possible for future patients by facilitating breakthrough research and development.

Building on A Record of Supporting Patients and Increasing Access to Organ Transplantation

Today's commitments build on earlier Administration actions to improve outcomes for individuals waiting for organ transplants and support living donors.

• Each year, approximately 6,000 Americans make the selfless decision to become a living organ donor, facilitating life-saving kidney and liver transplants. Thanks to the Affordable Care Act, individuals who have donated organs have access to health insurance without worrying whether their donation will be considered a pre-existing condition.

The Hope Act signed by President Obama in 2013 legalized the use of organs from HIV-positive donors for use in HIV-positive recipients, in the setting of clinical research. Earlier this year, surgeons at Johns Hopkins University performed the first-in-the-United-States HIV-positive to HIV-positive liver and kidney transplants. As this research continues, we will understand more about the success of these transplant procedures, and the potential for the use of organs from HIV-positive donors to increase access to all patients on the waiting list.

• HHS launched a nationwide kidney paired donation program in 2010 to build on the transformative innovation of pooling living donors and recipients to increase the likelihood of matches.

• Drawing on the spirit of innovation that President Obama spoke about in this year's State of the Union address, seven government agencies have invested nearly $3 billion over a 3-year period in the future of bioengineering to advance our understanding of wound repair and organ and tissue regeneration and preservation.

New actions announced today

Facilitating breakthrough research and development with almost $200 million in investments

Just a few generations ago, living without kidneys was unimaginable. But that diagnosis changed thanks to Dr. Willem Kolff, a Dutch immigrant who brought his invention of the dialysis machine to the United States after World War II. New breakthroughs in bioengineering, transplantation, and organ preservation can further increase the number of organ transplants and improve outcomes. Researchers have the potential to repair or replace tissues and organs, reduce waitlists for organ transplants, and potentially reduce health care cost for treatments - but we must continue to invest in breakthrough research and development. For example, consider that most organs can only be stored for three to twelve hours, which means that many viable transplant organs are discarded. If even half of all unused donated hearts and lungs could reach transplant patients in time, experts estimate that the waiting list for hearts and lungs could end in two to three years. Announcements include, among others:

• The Department of Defense (DOD) is announcing more than $160 million in public-private investment in a new Advanced Tissue Biofabrication Manufacturing Innovation Institute to research and develop next-generation manufacturing techniques that can be used to repair and replace cells and tissues and that may one day lead to organ replacement. DOD also is announcing $7 million in awards to small businesses working to advance the science and technology of organ and tissue preservation.

• The American Society of Nephrology (ASN) commits the first $7 million toward the design, launch, and execution of a potential Kidney Disease XPRIZE, in partnership with the XPRIZE Foundation.

• The Cystic Fibrosis Foundation (CFF) announces $15 million for projects dedicated to improving outcomes after lung transplantation.

• The Laura and John Arnold Foundation (LJAF) is announcing a $4.2 million grant to test donor interventions that maximize the quantity and quality of life-saving organs that each donor is able to give.

Closing the gap between the 95 percent of Americans who support organ donation and the roughly 50 percent who are registered organ donors

The donor registration system was first built in 1968 and has been run almost exclusively through states' Departments of Motor Vehicles. Despite data showing 95 percent of Americans support organ donation, only approximately half are registered as organ donors. Now, with new technologies available, there is an opportunity to re-imagine the donor registration system in more seamless and effective ways, with the goals of increasing registrations and life-saving transplants. Today, more than 20 entities—from organ procurement organizations (OPOs) to patient advocacy organizations to major technology companies—have committed to help reduce the agonizing wait for an organ transplant. Announcements include, among others:

• More than 12 organizations including Facebook, ORGANIZE, Tinder, and Twitter are developing new tools and public advocacy campaigns to increase the options and ease of registering to be an organ donor, with a goal of achieving 1 million new registrations and social declarations by the autumn of 2016.

• Amy Poehler's Smart Girls will create content and use its social channels to promote organ donation and registration throughout summer and autumn of 2016.

Investing in clinical research and innovation that could potentially increase the number of transplants by almost 2,000 each year and improve outcomes for patients

Federal agencies are taking new actions to improve outcomes in transplantation, by improving support for veterans-who experience kidney failure at a higher rate than the general public-and helping more Americans access life-saving transplants through kidney paired donation, which pools living donors and recipients to increase the likelihood of matches. Private sector organizations are developing better resources and tools that are critical to ensuring access to life-saving transplantation opportunities. Announcements include, among others:

• Walter Reed National Military Medical Center (Walter Reed Bethesda) today announces a pilot to pioneer kidney paired donation chains started via the military share program-in which families of active duty military service members donate one of their kidneys to patients listed for transplant at Walter Reed-to help those who are hard to match to receive kidney transplants.

• More than 30 transplant centers are today announcing a collaboration to share data and best practices for kidney transplants for hard-to-match patients, which has the potential to help almost 1,000 more people a year access transplants.

• Johns Hopkins University is working with the National Institute of Allergy and Infectious Disease to launch a multicenter study of HIV-positive to HIV-positive organ transplants; as protocols are developed to use the HIV-positive donor pool, this could lead to as many as 1,000 more transplants per year.

• The United Network for Organ Sharing (UNOS), the nation's Organ Procurement and Transplant Network, will increase efficiencies in the organ procurement and transplant system as well as the potential number of transplants through new technology and data tools that are open to transplant centers and the research community.

Reducing the Organ Waiting List

Revolutionary medical breakthroughs in the 20th century—such as advances in organ transplantation, tissue typing, and the development of immunosuppressant drugs—have led to hundreds of thousands of life-saving organ transplants and a longer survival rate for recipients.

Transplants of kidneys, livers, hearts, pancreata, intestines, and lungs are now considered achievable medical successes.

Advances in medicine and technology and increased awareness of the need for organ donation and transplantation have increased national rates of these interventions. Last year there were more than 30,000 transplants in the United States—representing the most annual transplants ever and the largest year-over-year percentage increase in transplants since 2004. Despite this progress, there are still more than 120,000 people on the waiting list for an organ in the United States.

The vast majority—almost 100,000—of the people on the organ waiting list are waiting for a kidney transplant. In addition to the tremendous human cost, the kidney waiting list carries a huge cost to the public purse: Medicare pays more than $34 billion per year to care for patients with end-stage kidney failure. According to the 2013 Economic Report of the President, on average, the Government would save $60,000 a year for every patient who receives a kidney transplant rather than continuing to receive dialysis. Those patients also would see appreciable gains in life expectancy. For example, the life expectancy of a living donor kidney recipient increases by 10-15 years after a transplant, again relative to dialysis treatment.

Today's announcements represent an essential step toward increasing access to organ transplants and reducing the organ waiting list. But there is more to be done. The Administration is committing to providing an update in the next 180 days, which will outline common-sense steps to reduce the organ transplant waiting list and improve outcomes for patients and will report on continued progress on public and private actions like those announced today. This update will be a roadmap for more opportunities in the three areas described in this Fact Sheet, including narrowing the gap between the 95 percent of Americans who support organ donation and the roughly 50 percent who are registered organ donors; new clinical research and innovations that can increase the number of transplants and improve outcomes for patients; and facilitating breakthrough research and development.

Full details on all of today's announcements can be found here.

Barack Obama, Fact Sheet: Obama Administration Announces Key Actions to Reduce the Organ Waiting List Online by Gerhard Peters and John T. Woolley, The American Presidency Project

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