The American Association of Kidney Patients has been at the forefront of engaging patients and their family members in patient-centered care since our beginning 45 years ago. Our founders, all of whom were patients or cared for a family member with kidney disease, started AAKP to encourage individuals coping with this chronic illness to better understand their health and related conditions so that they could take a more active role in their well being.
With the drastically rising rate of kidney disease, our mission to increase awareness of the disease and the importance of early detection and treatment is even more important. We know this work can only be accomplished in partnership with health care professionals and industry partners who develop the medicines, technologies, and service delivery models that help patients maintain their health.
The physician-patient partnership is a theme that AAKP has been stressing for 45 years, and we are now part of an era in which providers are more open to collaborating with patients and their families. The benefits of this collaboration are tremendous—patients and families participating in their care and decision making at whatever level they feel comfortable can only improve their outcomes and their quality of life.
Connecting patients and the treatment
Patient engagement is a phrase used a lot today, and for organizations like mine, it has been heartening to see that in recent years, this concept has truly been embraced both within the planning for health service delivery and the public policy process. It is of continuing concern, however, that there are still major disconnects between those organizations who are seeking the assistance of patients and those patients who want to assist. At one of the project review presentations at the June meeting of the Kidney Health Initiative in Bethesda, Ma., it was reported that 85% of clinical trials in one aspect of kidney disease are not able to recruit the required number of patient volunteers. Yet it was also reported that 75% of patients, when asked, would volunteer for a clinical trial. These are precisely the situations in which organizations like AAKP can be of immense value to both researchers struggling to reach patients and those patients who want to contribute to increasing knowledge of their disease etiology and the betterment of the kidney community. AAKP has thousands of members and interested individuals who have volunteered to participate in focus groups, research efforts, advocacy events and programs, and other activities that will better the quality of life of the patient. And should anyone think that it is only ESRD that stands to benefit from the input of organizations like AAKP, our ongoing survey of our constituents continues to show that up to 40% of our respondents are CKD stage 3 and 4 patients. Clearly there is strong interest across the entire spectrum of kidney disease in not only being the problem but also being part of the solution.
AAKP education efforts
Our educational programs are designed to increase patients’ knowledge and information available to them using the following objectives:
Assist individuals in learning more about their disease and becoming active participants in the planning and managing their health care.
Studies confirm that a better educated patient and family caregiver, working with their health care team of physicians, nurses, social workers, dietitians, and technicians, have improved long term outcomes in both quality of health and ability to lead a more productive and meaningful life.
Improve the understanding of and access to treatment options
AAKP has worked with many industry partners to better understand patients’ opinions and satisfaction with their current renal replacement therapy.
Reflect the views and concerns of kidney patients to public policy makers and others in the renal community.
Kidney disease care represents over $30 billion in federal medical expense and significant investment in infrastructure to ensure the quality of patient care. AAKP is able to utilize its patient volunteers when we provide testimony to congressional committees and government agencies on issues of kidney care. AAKP's more than 30,000 members and interested individuals are sought out by these decision makers as the grass roots opinion-setters for their policy direction.
AAKP has been strategically increasing its public profile and involvement within the health policy development process over the past several years. We are very active, alongside our allied organizations, in providing the patient voice to government officials through the U.S. Food and Drug Administration, the Government Accountability Office, the National Institutes of Health and the Centers for Medicare & Medicaid Services. Current AAKP public policy interests and initiatives include:
- Funding support of immunosuppressive drugs for the life of a transplanted kidney as well as oral medications for all kidney patients.
- The implementation of the Affordable Care Act and it meeting the ongoing needs of people with CKD (note on the above addition of the word “interest”– the ACA is an interest – not an AAKP initiative).
- Support of the HIV Organ Policy Equity (HOPE) Act that allows research on donation of organs from deceased HIV-infected donors to HIV-infected recipients
- A fix to training reimbursement to provide Medicare patients greater access to life-changing home hemodialysis therapies.
- And increase funding to institutions that do research on patient care such as the National Institute of Health, Agency for Healthcare Research and Quality, and Patient Centered Outcomes Research Institute.
In looking to the future, AAKP is working to develop and expand programming to improve the quality of the lives of patients and their families. Along with our advocacy and engagement efforts, we plan to target new resources on activities that will allow patients to enjoy their lives to the fullest extent possible. We believe that patient-driven organizations are uniquely situated to develop programs benefiting patients and making their lives more enjoyable by directly involving the patients themselves in the development process. Our work is driven by the sobering statistics regarding new patient mortality. We are proud to join with many other organizations and many thousands of health care professionals who tirelessly work to change these tragic numbers and improve outcomes for America’s kidney patients and their families.