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Author Topic: Obama Administration Announces Key Actions to Reduce the Organ Waiting List  (Read 2658 times)

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Offline Clark

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https://www.whitehouse.gov/the-press-office/2016/06/13/fact-sheet-obama-administration-announces-key-actions-reduce-organ


[/size]https://www.whitehouse.gov/sites/whitehouse.gov/files/documents/White_House_Organ_Summit_Fact_Sheet_FINALv2.pdf

Obama Administration Announces Key Actions to Reduce the Organ Waiting List


[/size]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.[/size]President Obama, May 19, 2016


"... The Health Resources and Services Administration (HRSA), an agency of the U.S. Department of Health and Human Services (HHS), commits to help support living donors and ensure appropriate metrics are in place to help more patients receive deceased-donor transplants."
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"Support for living donors. In collaboration with the American Society of Transplantation (AST)
and the American Society of Transplant Surgeons (ASTS), HRSA announces a coalition to support living donors. The coalition will include patient organizations and other stakeholders within the transplant community, and seeks to help address three key areas: providing education and resources for potential living donors to make an informed decision about donation, addressing financial and other barriers to donation, and ensuring that living donors have long-term medical follow-up and access to care. This summer, HRSA will release findings from the Scientific Registry of Transplant Recipients (SRTR) on the feasibility of establishing a national living donor registry to obtain information about long-term health and socioeconomic outcomes of living organ donation."


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[/size]"The American Society of Transplant Surgeons, Baylor University Medical Center, Cleveland Clinic, Fahrenheit 212, Mount Sinai Health System, ORGANIZE,  and the University of Chicago Medicine are launching a collaborative to explore the design and development of an Anonymous, Non-designated Living Donor Database. While only one donor is required for any particular transplant patient, for many transplant recipients, multiple potential donors are identified; this project will help centers direct these additional willing donors fairly and ethically to other donation opportunities, including to start living donor chains.

Beth Israel Deaconess Medical Center, Duke University School of Medicine, Emory University, Mount Sinai Hospital, Northwestern University, Temple University, and the
[/font]University of California Los Angeles have created a Blue Ribbon Advisory Panel committed to establishing a national clearinghouse of educational resources about transplant and living donation for patients, living donors, and the interested public. Their goals are to ensure informed transplant and living donation decision-making and equity in access to quality information to combat barriers that research suggests limits access to transplants. Resources will be made publicly available by the end of the summer of 2017."


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"Johns Hopkins University, working with the [/font]National Kidney Foundation and Novartis, will disseminate a comprehensive set of educational resources to more than 50 leading transplant centers to expand the Live Donor Champion Program. This program will help centers teach patients how to leverage their personal connections and social networks to raise awareness about the need for organ donors and to help identify potential live donor candidates. Participation in the program is associated with an over five-fold increase in identification of potential live donor candidates. Given that Hispanic patients are disproportionately affected by kidney disease and are less likely to pursue live donor transplantation, Northwestern University will tailor a Live Donor Champion model for this community. Novartis will also launch a lecture series to educate 20 transplant centers about culturally competent ways to engage Hispanic families in discussions about transplant and living donation, in particular. As African-Americans also face a significantly higher incidence of end stage renal disease and disproportionately low rates of live donor transplantation, the University of Alabama at Birmingham will tailor a Live Donor Champion model for African- American patients. These tailored models will be publicly available by the end of 2016.
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Johns Hopkins University and
ORGANIZE are launching a second version of a living donor app, Donor, to help patients find life-saving kidney or liver transplants using social media. Donor helps patients create and post their personal story directly to Facebook. In the initial pilot study, patients who used Donor had a six-fold increase in finding a living donor compared with patients who did not. Facebook, which provided the initial funding for Donor, will continue to explore ways to support the app and Johns Hopkins and ORGANIZE’s efforts. The next round of testing will take place in June with Johns Hopkins University, Northwestern, the University of Alabama at Birmingham, and Walter Reed Bethesda, with expanded roll-out to at least ten transplant centers by the end of 2016.


[/size]The National Kidney Foundation (NKF) will launch a nationwide campaign called The Big Ask/The Big Give to promote awareness of living kidney donation for recipients who have trouble asking someone to consider kidney donation and potential donors. The Big Ask/The Big Give will roll out in the fall of 2016 in transplant centers, dialysis centers, and nephrology practices, providing education to remove misconceptions and confusion from what can be a complex process for patients and donors. NKF will also host a Consensus Conference on Kidney Discards in early 2017 to explore approaches to reduce the number of kidneys that are discarded—currently 3,000 every year.
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The
National Kidney Registry (NKR), the largest kidney paired exchange network in the United States, announces a reimbursement program to pay for out-of-state physician fees associated with organ removal from non-Medicaid beneficiaries when the organ transplant recipients are Medicaid beneficiaries. While states can pay for out-of-state providers if they deliver a service to a Medicaid beneficiary, physician fees associated with organ removal from a donor who is not a Medicaid beneficiary generally are not reimbursable by a state Medicaid program. This new NKR program will reimburse a standard rate for the donor surgeon and anesthesiology fees which are required to facilitate the removal of the living donor’s kidney, providing transplant opportunities for the underserved Medicaid population and reducing health care inequality. Although medical complications related to kidney donation are rare, NKR and its Member Centers are committed to covering such costs so that they are not borne by donors, and is therefore today announcing the creation of a $1 million Donor Protection Program."


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[/size]"The University of Pittsburgh Medical Center (UPMC) and the Children’s Hospital of Pittsburgh of UPMC, the Nation’s first pediatric transplant program, commits with Donate Life America to pioneer innovative outreach via social media to increase the availability of living donor organs with the goal of minimizing transplant wait list mortality for all patients with an emphasis on eradicating pediatric wait list mortality. This effort will be launched in 2016 to patients and their families, integrating social media experiences to educate families of patients waiting for a donation about living donation. Tools will be shared with the broader transplant community via social media, Donate Life America communications, national webinars and meetings."


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[/size]"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."

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« Last Edit: June 15, 2016, 11:43:50 AM by Clark »
Unrelated directed kidney donor in 2003, recipient and I both well.
620 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
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