White House Organ Donor Summit
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White House Involves AAKP in Organ Summit
AAKP Recognizes White House Efforts for Living Donors and Those Awaiting Transplants
Washington D.C. – On June 13, 2016, the American Association of Kidney Patients (AAKP) participated in the White House Organ Summit with Senior Administration officials, allied national kidney organizations, leaders from national foundations, medical associations, transplant hospitals, dialysis providers, universities and private companies committed to both increasing access to and reducing the wait for an organ transplant.
“The White House Summit is an important step forward in a sustained national effort to focus public attention on the need to increase access to organ transplants through increased living donations and to improve transplant patient outcomes. This event is an important development in the larger national effort to offer hope to individuals who wake up every day awaiting the gift of life a transplant offers them,” stated Paul T. Conway, President, AAKP. “The commitments made at the summit were substantial and open the possibility to see more and more lives saved through increased organ donations,” Conway added.
Approximately 100,000 of the 120,000 individuals awaiting an organ transplant are in need of a kidney, and 13 people die each day as a result of a shortage in donation. The gap between support for and actual organ donation suggests much can be done to increase donations – although 95% of Americans support organ donation, only half are registered to donate life.
AAKP was first contacted by the White House Office of Science and Technology in 2015 and worked on an ongoing basis with staff from the White House Office of Science and Technology and the National Economic Council on issues related to the planning and organization of the summit.
Richard Knight, Vice President, AAKP noted, “As the only patient led and centered organization at the table, we know that the best care is patient-centered care in which the patient’s voice is heard. That remains true for public policy as well, and AAKP is committed to ensuring patients are fully engaged in the policy and administrative processes as well as in educating our fellow Americans on how they can give the gift of life through becoming an organ donor.” Knight was invited to speak by the White House Office of Science and Technology staff on the specific issue of disparities in transplantation and recommendation on how to better engage patients, families and minority communities in the transplantation process.
During the summit some key commitments were announced, including investments of almost $200 million for research and development; investments in innovation that aim to improve outcomes and increase the number of overall transplants by close to 2,000 each year and efforts to aggressively engage Americans on social media through targeted use of online platforms and campaigns such as #OrganDonor. (Full details of the summit can be found at https://www.whitehouse.gov/sites/whitehouse.gov/files/documents/White_House_Organ_Summit_Fact_Sheet_FINALv2.pdf)
AAKP has been engaging patients and policy makers at a rapidly increasing rate, having included social media as a key part of the organization’s strategy moving forward. In the last year alone, the organization has directly trained over 200 patients on social media tools, best practices and effective messaging and even created the AAKP Social Media and Advocacy Award, launched last year.
Conway ended saying, “The American people are altruistic by nature, and we are confident that if we fulfill our commitments at the education, policy and investment levels, the number of donors will increase substantially.”
Conway and Knight, as President and Vice President respectively, both represented AAKP at the White House Summit.
Conway has managed kidney disease for more than 35 years, including two years on dialysis. He received his kidney transplant more than 18 years ago and says not a day goes by that he does not think of the donor and the donor’s family. Conway has a long career in public service, having served under four presidents, including transition for Presidents George W. Bush and Barack Obama, and three governors.
Knight has managed kidney disease for 20 years, including 2 years on dialysis. He received his kidney transplant approximately 10 years ago and is thankful for the gift of life with each breath, dedicating his life to helping others through advocacy and education efforts. Knight also has a long and distinguished career in public policy having served in communications, policy and legislative roles on the Hill, as well as the representative for his Member of Congress to the Congressional Black Caucus of the U.S. House of Representatives.
For more information about AAKP and its programs, visit www.aakp.org or call 1-800-749-2257.
Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America. Governed by a patient-majority Board of Directors, AAKP conducts national education programs designed to better inform kidney patients, care-givers and policy-makers about the true impacts of kidney disease, prevention efforts and treatment methods. AAKP executes a national advocacy strategy in conjunction with allied kidney organizations designed to insert the patient voice into proposed policies, research efforts and care deliberations before the Executive Branch and the U.S. Congress.[/vc_column_text][/vc_column][/vc_row]