Gary Green, AAKP Executive Director
June 29-30, 2016, WASHINGTON, D.C. The KidneyWorks™ Initiative, a new research and policy collaboration aimed at helping Americans with Chronic Kidney Disease (CKD) who are not on dialysis maintain their jobs and slow their disease, was rolled out recently on Capitol Hill by the American Association of Kidney Patients (AAKP) and the Medical Education Institute (MEI). An estimated 10% of U.S. adults, more than 20 million Americans, have some degree of CKD, ranging from stages CKD I to CKD V (kidney failure). Millions of Americans afflicted with the earliest stages of kidney disease are currently in the labor force and successfully hold jobs long before the need for renal replacement therapy (dialysis or a kidney transplant) at CKD stage V.
AAKP and MEI jointly convened the KidneyWorks™ Initiative’s Consensus Conference at the Hall of States Building in Washington D.C. with over thirty national experts in the fields of patient engagement, renal care, health and insurance data mining, labor force data mining, Federal reimbursement, physical exercise, renal social work and vocational rehabilitation. During the conference, stakeholders identified issues and barriers that interfere with patient goals to stay healthy, remain engaged, continue working and paying taxes. Expert participants formulated strategies and recommendations to help patients slow progression of their disease, successfully manage symptoms, maintain incomes and standards of living and preserve their quality of life.
The results of the KidneyWorks™ Initiative’s Consensus Conference will be a white paper to be issued in late 2016 that will present the experts’ findings and recommendations for Federal, non-profit and private sector policies and programs that will encourage patients to maintain their employment while they manage their illness. AAKP and MEI plan to present the white paper recommendations to the United States Congress as well to relevant representatives of the Presidential Transition Team for the President-Elect. The Consensus Conference was the first of several collaborative actions between AAKP and MEI.
“Chronic kidney disease poses great challenges to patients who need and want to work, but they are not insurmountable and no patient should be encouraged to prematurely leave their job, put their aspirations on hold and go on disability unless it is an absolute medical necessity,” stated Paul T. Conway, president of the American Association of Kidney Patients. Conway is a former Chief of Staff of the U.S. Department of Labor and kidney transplant recipient who has managed kidney disease for over thirty-five years.
“KidneyWorks has assembled an exceptionally talented national ‘dream team’ committed to identifying misperceptions and artificial barriers that keep kidney patients from staying engaged in their careers, and developing practical recommendations that will help us effect change and keep people working despite CKD,” stated Dori Schatell, MS, Executive Director of the Wisconsin-based MEI.
Working with kidney disease can be challenging and symptoms at earlier stages can include fatigue, headaches, nausea, muscle cramps, shortness of breath, and problems sleeping. All of these can interfere with work, but symptoms are often treatable. Having a job that provides an employer group health plan or enough income to purchase a private health plan will help ensure that CKD patients who desperately need preventive care will receive it—and will help them stay active and productive.
Participant experts represented some of the most influential Federal, professional and non-profit and private sector stakeholders directly involved in long-term kidney patient health and employment-related issues.
Stakeholders represented at the Consensus Conference included:
Patient and Professional Organization:
American Association of Kidney Patients (AAKP)
American Health Quality Association (AHQA)
American Society of Nephrology (ASN)
Kidney Health Initiative (KHI) – (a collaborative of U.S. Food and Drug Administration and ASN)
Medical Education Institute (MEI)
Renal Physicians Association (RPA)
Centers for Medicare and Medicaid Assistance (CMS), U.S. Department of Health and Human Services
Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services
National Kidney Disease Education Program (NKDEP) within the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH)
Office of Disability Employment Policy (ODEP), U.S. Department of Labor
Dialysis Clinic, Inc.
Fresenius Kidney Care
Northwest Kidney Centers
At the event, AAKP and MEI expressed their appreciation to the sponsors of the KidneyWorks™ Initiative’s Consensus Conference including Baxter International Inc.; DaVita, Inc.; Dialysis Clinic, Inc.; Fresenius Kidney Care; National Renal Administrators Association; Northwest Kidney Centers; Renal Medicine Foundation; and the former ESRD New York Network.
Founded in 1969, AAKP is the largest and oldest independent kidney patient organization in America and is 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 so that patient interests are fully represented.
Founded in 1993, MEI is a national 501(c)(3) non-profit organization dedicated to helping people with chronic diseases learn to manage and improve their health, and a focus on chronic kidney disease. MEI fulfills its mission by conducting research, developing evidence-based educational materials for consumers and health professionals, and advocating for patient-centered policies. Tax-deductible contributions can be made through MEI's website, www.meiresearch.org.