Kidney transplant recipient Paul T. Conway, the president of the Tampa-based American Association of Kidney Patients (AAKP)—the oldest and largest independent kidney patient advocacy organization in the United States—will be the presenter June 20 at the Medicine Grand Round on behalf of the University of Arizona Division of Nephrology.
He’ll offer a unique view from the patient side of the doctor-patient relationship, particularly as it relates to dialysis and eventual kidney transplant for sufferers of chronic kidney disease (CKD) and end-stage renal disease (ESRD), said Prabir Roy-Chaudhury, MD, PhD, Nephrology division chief, Arizona Kidney Kidney and Vascular Research Program director and a professor of medicine.
Conway’s topic will be: "Patient Voice – the Disproportionate Power Driving Quality and Innovation in Kidney Care." The grand rounds for the UA Department of Medicine occur on Wednesdays, noon-1 p.m., in Room 5403 of the UA College of Medicine – Tucson, 1501 N. Campbell Ave. His talk also will be simulcast live as a webcast in Conference Room 3030, Banner – University Medical Center South, 2800 E. Ajo Way.
Watch It LIVE! — or view an archived version of his lecture here, too.
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“When we talk about patient-centered care we always have doctors doing this when, in reality, it should be patients like Paul Conway leading the way,” added Dr. Roy-Chaudhury, who also is national co-chair of the Kidney Health Initiative, a public priviate partnership between the U.S. Food and Drug Administration and the American Society of Nephrology. “We are honored to have him deliver the Medicine Grand Rounds on behalf of the Division of Nephrology.”
He noted that Conway is both a kidney patient and a skilled senior administrator and civil servant, who has used this unique skill set to place the patient perspective front and center in professional organizations and on Capitol Hill in Washington, DC.
Conway has managed with kidney disease for 37 years, including nearly three years on dialysis and, for the past 20 years, as a kidney transplant recipient. His expertise includes federal agency operations and national communications and he has served under three governors, four U.S. presidents, and in support of five presidential transitions.
His previous federal posts have included chief of staff of the U.S. Department of Labor, the U.S. Office of Personnel Management, and an agency at the U.S. Department of Homeland Security, as well as special assistant in the White House Office of National Drug Control Policy. He is a recipient of the DHS Secretary’s Meritorious Silver Medal for significant contributions to the strategic mission of DHS and served on the team that established DHS. In Virginia, he has served as deputy secretary of Health and Human Resources and as a member of both the Board of Health Professions and the Commonwealth Protection Panel for homeland security.
Conway also is a recipient of the 2017 President’s Medal from the American Society of Nephrology (ASN) and was recently named by the U.S. Food and Drug Administration as the chair of the new FDA Patient Engagement and Advocacy Committee. He serves on the External Evaluation Panel for the Kidney Precision Medicine Project (KPMP) for the National Institutes of Health (NIH) and is a newly named patient voice editor for the Clinical Journal of the American Society of Nephrology (CJASN). His current national board involvement includes: The Kidney Health Initiative (KHI); the Nephrology Specialty Board of the American Board of Internal Medicine (ABIM); the United Network for Organ Sharing (UNOS) Kidney Committee; and the Center for Dialysis Innovation (CDI) at the University of Washington. And he is a member of the federal legal and regulatory issue team for the Clinical Trials Transformation Initiative (CTTI), an FDA collaborative based at Duke University in Durham, N.C.
The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization to elevate the kidney patient voice in the national health care arena, provide patients with educational resources to improve their lives, and give kidney patients and their family members a sense of community. Their early efforts were crowned in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation. Today, AAKP has grown into a nationally recognized patient organization that reaches over a million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health. Learn more at https://aakp.org
- There are currently 121,678 people waiting for lifesaving organ transplants in the U.S. Of these, 100,791 await kidney transplants (as of 1/11/16).
- The median wait time for an individual’s first kidney transplant is 3.6 years and can vary depending on health, compatibility and availability of organs.
- In 2014, 17,107 kidney transplants took place in the United States. Of these, 11,570 came from deceased donors and 5,537 came from living donors.
- Over 3,000 new patients are added to the kidney waiting list each month.
- 13 people die each day while waiting for a life-saving kidney transplant.
- Every 14 minutes someone is added to the kidney transplant list.
- In 2014, 4,761 patients died while waiting for a kidney transplant. Another, 3,668 people became too sick to receive a kidney transplant.
[SOURCE: National Kidney Foundation]