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Kidney Policy Summit Elevates Innovation Over Status Quo


Deborah Pelaez
(800) 749-AAKP / dpelaez@aakp.org

AAKP Convenes Capitol Hill Meeting with Broad Range of Key Policy Influencers

September 29, 2018–WASHINGTON, D.C. – The American Association of Kidney Patients (AAKP) hosted its Inaugural Public Policy Summit entitled The Transformation of American Kidney Care, on September 28 – 29, 2018 at The Hall of States Building in Washington, D.C., a few steps from the U.S. Congress.  Founded in 1969, the AAKP is the oldest and largest, fully independent kidney patient organization in the U.S.A and is a nationally recognized leader in patient education, promotion of innovation and defense of kidney patient care choice.  The Summit is the first of multiple national events related to AAKP’s 50th Anniversary year of celebration.

The Summit, conducted under AAKP’s Center for Patient Research and Education, highlighted key efforts designed to accelerate innovation in kidney diagnostics, devices, biologics, transplantation and care delivery. Numerous new private sector developments as well as initiatives involving the Federal government were discussed including the Kidney Precision Medicine Project (https://kpmp.org) at the National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases as well as the KidneyX initiative (www.kidneyx.org) underway at the U.S. Department and Health and Human Services in collaboration with the American Society of Nephrology.

The Summit was opened by U.S. Department of Labor Chief of Staff Nicholas C. Geale, who gave remarks highlighting the recent decision by U.S. Secretary of Labor Alex Acosta to extend the Family Medical Leave Act (FMLA), including job protections, to living organ donors.  The Secretary’s actions have been enthusiastically applauded by the kidney community and represents the elimination of a major barrier to transplantation that potential donors, patients and transplant professionals have worked to eliminate for over a decade. Geale is a former Director of Oversight and Investigations for the U.S. Senate Health, Education, Labor and Pensions (HELP) Committee.

Paul T. Conway, AAKP President, transplant recipient and a former Chief of Staff for the U.S. Department of Labor, stated, “We are appreciative to all Summit participants, and especially grateful to Labor Secretary Alex Acosta for extending FMLA coverage to living organ donors and removing a substantial barrier to transplantation.  Kidney patients, exercising their freedom to demand care choice and treatments that better align to their aspirations, are the single greatest driving force behind medical research and innovation. AAKP proudly aligns itself with leaders in all sectors who have the courage and willingness to question the status quo in an effort to improve kidney care.”

Summit speakers from the private sector included: Peter Maag, CEO of CareDx; Joe Muldoon, CEO of FAST BioMedical; Dr. Jeff Lawson, CEO of Humacyte; Michelle Machuca, Director of Marketing and Reimbursement of TVA Medical, Dr. Bill Fissell Medical Director of The Kidney Project; Tricia D’Antonio, RPH, MS, MBA, BCGP, President of Professional Affairs of the Gerontological Society of American and Vice Chair of the Patient Access to Pain Relief Coalition; and Melissa West, Project Manager of Kidney Health Initiative.  Dr. Bruce Culleton, Vice President and Chief Medical Officer of CVS Specialty discussed CVS plans, announced earlier this year (https://cvshealth.com/newsroom/press-releases/cvs-health-announces-plans-focus-kidney-care-and-dialysis-treatment), to offer kidney patients greater care choice through patient-centered options aimed at increasing pre-emptive transplants and home dialysis.  Federal representatives presenting at the Summit included representatives from the National Institute of Health, National Institute of Diabetes and Digestive and Kidney Diseases; the Department of Health and Human Services; the Center for Disease Control and Prevention; the Food and Drug Administration; Centers for Medicare and Medicaid Services; Center for Medicare and Medicaid Innovation; and the Patient Centered Research Outcomes Institute.

“As the leading independent national patient organization in the renal community, AAKP was uniquely positioned to host this Policy Summit. In addition to our esteemed panelists, we were pleased to have an audience comprised of top patient advocates, medical professionals, policy-influencers from across Washington, D.C. along with others committed to substantive innovation.  AAKP will soon make the full proceedings available to patients and the kidney community via social media along with published summary Summit highlights,” stated Richard Knight, AAKP Vice President, Chair of Public Policy and transplant recipient.

AAKP patients helped gain Congressional passage of the End Stage Renal Disease (ESRD) Act in 1972, which has saved millions lives for those suffering from kidney failure.  The Inaugural Public Policy Summit was professionally filmed by Briar Patch Media for AAKP and highlights will be made available throughout the coming months via AAKP social media (Facebook @kidneypatient and Twitter @kidneypatients) and on the AAKP website (www.aakp.org). The Summit was sponsored by patient donations from across the country, as well as corporate sponsors including: CareDx; Amgen, Inc.; Hansa Medical; Otsuka America Pharmaceutical, Inc.; Relypsa; Rockwell Medical; and TVA Medical.