White House Organ Summit 2016 June 20, 2016 by Kylie Karley The Obama Administration met with numerous companies, foundations, hospitals, universities, and patient advocacy groups at the White House’s Organ Summit on Monday, June 13. The goals of the summit include increasing the number of organ transplants by 2,000 each year, improving patient outcomes, facilitating research and developments around organ donation, and closing the gap between Americans who support organ donation and those who are actually registered organ donors. Last year, the United States exceeded 30,000 annual organ transplants for the first time, yet 120,000 Americans are still waiting for an organ donation. Today, twenty-two people will die waiting for a life-saving transplant. President Obama, and several government and non-governmental organizations have made many efforts to reduce the organ donation waitlist, support patients, and increase access to organ transplantation. Announced on Monday, almost $200 million in investments will be made to facilitate research and development related to organ donation. Specifically the Department of Defense (DOD) in a $160 million public-private investment will create an Advanced Tissue Biofabrication Manufacturing Innovation Institute to develop new manufacturing techniques to repair organ damage by replacing cells and tissues and that can hopefully be used one day to replace entire organs. In similar efforts, the DOD will award small businesses working to advance the science behind preserving organs and tissues. The donor registration system is being re-imagined to seamlessly and effectively increase registrations and transplants. More than a dozen organizations including Facebook and Twitter are finding new tools and developing campaigns to make registering to be an organ donor easier with the intention of signing up 1 million new donors by fall of 2016. More than 100,000 people on the organ waiting list are awaiting a kidney transplant so kidney-specific projects were a highlight of Monday’s Summit. The American Society of Nephrology will partner with the XPRIZE Foundation to encourage the development of a new device solution for patients experiencing end-stage renal disease – an improvement on current dialysis methods. This project aims to overcome the decades of stagnation in kidney disease treatment. In addition, dozens of transplant centers announced a collaboration to share data and best practices for hard-to-match patients, which could help more than 1,000 people gain access to transplants. Johns Hopkins University is currently working with the National Institute of Allergy and Infectious Disease to create HIV-positive donor pools, which could also lead to as many as 1,000 more transplants per year. Part of the Organ Summit included the publication of letters written by organ donation recipients. One of which was from NBA player Alonzo Mourning, a kidney transplant patient. Mourning, who lost his kidney due to FSGS, went on to win a championship following his transplantation, and today brings awareness to the efforts of the White House and the importance of organ donation registration.
Your Advocacy Creates Change – Living Donor Protection Act February 26, 2016 by Kylie Karley 2/26/16 – Because of your efforts on Capitol Hill, the Living Donor Protection Act of 2016 was introduced yesterday by Rep. Jerrold Nadler (D-NY) and Rep. Michael Burgess, MD (R-TX) in the House, and Sen. Mark Kirk (R-IL) and Sen. Kirsten Gillibrand (D-NY) in the Senate. This legislation promotes organ donation and protects the rights of living organ donors. It is made possible in part by YOUR action on Kidney Community Advocacy Day, a joint advocacy event with the support of 16 separate kidney organizations and led by the American Society of Nephrology (ASN).For many patients with kidney failure, a transplant can be the best form of kidney replacement therapy. But today, more people than ever are waiting for this life-saving measure: a patient is added to the kidney transplant wait list every 14 minutes. In 2014, there were 101,168 people on the kidney transplant wait list, but only 5,536 living donor transplants performed that year. The Living Donor Protection Act would increase the number of kidney transplants by eliminating pointless barriers to donation. This bill prohibits insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors. It also clarifies that living organ donors can use Family Medical Leave Act time to recover from donation surgery and maintain job security. This important legislation will allow more Americans to consider living organ donation and help countless people receive the gift of life. NephCure Kidney International strongly supports this bill and joins ASN and the National Kidney Foundation in urging members of Congress to support this bi-partisan legislation. Want to make sure this bill becomes law? Tell your Senators and Representatives why it’s important to you, and urge them to cosponsor it. You can find supplemental documents to send to your congresspeople here.