It's hard to believe that we are well into the first month of 2024. We are so proud of the impact AKF made in 2023 on the lives of people with kidney disease, who are at the heart of everything we do. In 2024, as always, people in the kidney community remain front and center in our efforts. Here are some of our top goals for this year:
Bridge the gap from diagnosis to cause
We are excited to further expand our Know Your Kidneys™ nationwide education campaign that teaches people about the vital role their kidneys play in their overall health and empowers them to take action to prevent or slow the progression of chronic kidney disease (CKD). Ensuring that we raise overall awareness of CKD, educating people about getting a proper diagnosis and cause of their disease and providing evidence-based resources to help people manage kidney disease is a top priority. We can't wait to share our newest resources for patients at any stage of their kidney disease journey.
Continue to raise awareness of rare kidney disease and improve diagnosis and treatment of kidney disease
A variety of health and environmental conditions can lead to kidney disease and kidney failure. Identifying the root cause of patients' kidney disease, both early in the disease and as patients work with a doctor to manage their condition, is important for making crucial treatment decisions.
Unfortunately, in a survey released by AKF in 2022, providers said they estimated that up to 15% of their patients have kidney disease with no known cause. The survey also revealed that primary care teams are significantly less aware of several kidney conditions than are nephrologists, with rare kidney diseases like focal segmental glomerulosclerosis (FSGS) and immunoglobulin A nephropathy (IgAN) having the greatest discrepancies in awareness levels. Furthermore, awareness of genetic testing for rare kidney disease - an important diagnostic tool - is low among primary care physicians, nurse practitioners and physician assistants.
In 2024, AKF will keep working to increase visibility and awareness of rare kidney disease and improve diagnosis and treatment through our Unknown Causes of Kidney Disease (UCKD) Project, which since its launch has convened key stakeholders in its efforts to drive innovation in research, diagnosis and treatment of the underlying causes of kidney disease. This year, we look forward to continuing this collaborative work, providing resources for both patients and health care professionals, and once again bringing advocates to Capitol Hill to discuss policies that will advance research, diagnosis and awareness of rare kidney diseases.
Lead efforts on kidney health equity
Last year, AKF launched a new website, Kidney Health for All™, to improve health equity in kidney disease and reach people from racial and ethnic minority groups who are most disproportionately affected by kidney failure. In 2024, AKF will be adding new tools and resources to the website and work to raise awareness of kidney disease in those communities most affected. AKF will also continue its collaborative work with the AKF Health Equity Coalition, a collective comprised primarily of organizations with aligned missions represented by subject matter experts, patients and advocates that provides guidance on applying evidence-based solutions to improve racial health equity in kidney disease within four areas. These areas are prevention/slowing progression, increasing diversity in clinical trial participation, increasing access to transplant and increasing utilization of home dialysis.
Bring accessible, high-quality and highly rated education to patients and professionals
Throughout 2024, AKF will provide a variety of educational programming, including our fifth annual Kidney Action Week from March 18-22. This free, week-long virtual event will feature world-class speakers who will lead sessions about dialysis, kidney disease prevention, kidney-friendly eating, transplant, innovations in kidney disease research and more.
Additionally, Kidney Health Coach (KHC), our free, online community health education training program that provides information about preventing, managing and treating kidney disease, as well as living a healthy lifestyle, continues to grow. AKF will conduct quarterly collaborative calls with coaches so they can learn more about specific topics like nutrition, transplant and health communications, while the KHC portal will be updated with new resources tailored to different KHC audiences – lay and professional. In addition, AKF's new Kidney Health Coach Advisory Council will provide guidance and new ideas for the program.
Galvanize the kidney community in support of policy priorities at federal and state levels that will improve health outcomes and promote health equity
AKF remains committed to advocating for and supporting legislation and policies that will improve the lives of people in the kidney community through our advocacy efforts, including in-district meetings, state legislative hearings, AKF staff meetings with elected officials and through events like Kidney Action Day on Capitol Hill. Our legislative priorities include:
The Living Donor Protection Act of 2023 (H.R. 2923/S. 1384), which would remove several barriers to living organ donation by ensuring crucial job protections for donors and certifying that life, disability or long-term care insurance companies cannot decline or limit specific insurance coverage to living donors due to their status as an organ donor.
The New Era of Preventing End-Stage Kidney Disease Act of 2023 (H.R. 6790), bipartisan legislation that would expand community and health care provider awareness and improve diagnosis of rare kidney diseases.
The Chronic Kidney Disease in Research and Treatment Act of 2023 (H.R. 5027), which would increase awareness of kidney disease and expand preventative services.