A new research and policy collaboration, called the KidneyWorks Initiative, aims to help Americans with chronic kidney disease who are not on dialysis maintain their jobs and slow their disease. The American Association of Kidney Patients (AAKP) and the Medical Education Institute (MEI) launched the initiative on Capitol Hill.   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).

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.

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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,” sais 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.

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.

“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.

Participant experts included:

Patient and professional organizations:

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)

National Renal Administrators Association

Renal Physicians Association (RPA)

Federal government organizations:

Centers for Medicare & Medicaid Assistance

Health Resources and Services Administration

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

Private sector:

Baxter International


DaVita, Inc.

Dialysis Clinic Inc.

Fresenius Kidney Care

Northwest Kidney Centers