White House Summit: Plans that will improve outcomes for individuals waiting for organ transplants and support for living donors

Published on June 13, 2016

The good news is that reducing the organ waiting list is a problem that can be solved – and that’s why today, the Administration and companies, foundations, universities, hospitals, and patient advocacy organizations are taking steps to change that by announcing a new set of actions that could improve outcomes for individuals waiting for organ transplants and support for living donors.

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.

Twenty-two people die every day in the United States while waiting for a life-saving transplant.

One thing that has been done is that centers have begun to build a blue ribbon panel that will set up a national clearing house of educational materials with respect to organ donation and transplantation education.

Some of the goals are as follows:

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

Invest in clinical research and innovation that could potentially increase the number of transplants by almost 2,000 each year and improve outcomes for patients
Facilitate breakthrough research and development with almost $200 million in investments

LI TRIO has the summit here so you can view it anytime.

More about 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% 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.

Congress proposed and passed the Hope Act in 2013 and this act 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.

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.

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.

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.

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

Each year, approximately 6,000 Americans make the selfless decision to become a living organ donor, facilitating life-saving kidney and liver transplants.

More info:

A letter from NBA Champion Alonzo Mourning about his kidney transplant