For nearly 50 years, since 1969, the American Association of Kidney Patients (AAKP) has been dedicated to improving the quality of life for kidney patients through education advocacy, patient engagement and the fostering of patient communities. It is a recognized leader in patient-centered education, continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.
AAKP has been the patient voice that advocates for improved access to high level health care through regulatory and legislative reform at the federal level. It is leading the effort to bring kidney disease patients together to promote community, conversations and to seek out services that help maximize patients' everyday lives.
Its principles include the following:
- Elevate the patient voice in medical and national policy decisions;
- Protect the unique relationship between patients and their doctors;
- Educate patients and preserve patient choices as informed consumers of healthcare;
- Maintain AAKP independence in all national policy and operational decisions. Operate on the policy of “no surprises” among trusted allies and government officials.
One important and impressive arm of AAKP is its Center for Patient Engagement and Advocacy. Members who have signed up with their action center receive alerts on when to add their independent voice to those of other kidney patients and caregivers in the corridors of power in Washington, D.C. “Remember, government works for you – and not the other way around,” is their motto.
Members are urged to attach their personal story to their messages about legislation and policy such as the bi-partisan Living Donor Protection Act of 2017 (H.R. 1270). The goal is to let lawmakers know their concerns so that these elected representatives will learn how their decisions will impact kidney patients’ lives, as well as those of caregivers, or living donors. It is hoped that policymakers can be influenced into making wise budgetary and people-based policy decisions.
Over the past half century, AAKP’s independent advocacy voice has helped improve long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.