American Kidney Fund policy agenda
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation's leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease — from prevention through post-transplant living. With programs of prevention, early detection, financial support, disease management, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. AKF is one of the nation's top-rated nonprofits, investing 97 cents of every donated dollar in programs, and holds the highest 4-Star rating from Charity Navigator and the Platinum Seal of Transparency from GuideStar.
We are a strong and independent voice advocating for policies that improve access to health care and that strengthen quality of care for Americans living with kidney disease. We work with Congress, the Administration, federal agencies and state governments to make kidney disease a national priority.
AKF partners with many other advocacy groups to achieve policy priorities. In many instances, AKF will advocate for policies directly; in other cases, we will support the efforts of other advocacy organizations.
The following are AKF's policy agenda for 2023.
Addressing health disparities and advancing health equity
There are longstanding health disparities in the U.S. — differences in health outcomes and health care among groups of people related to their race, ethnicity, age, disability, gender, geographic location, socioeconomic status and sexual orientation. Kidney failure (end-stage renal disease or ESRD) disproportionately impacts minority populations: Black Americans make up just 13 percent of the U.S. population, but they account for 35 percent of Americans with kidney failure and are 3.4 times more likely than white Americans to develop kidney failure. Native Americans are 1.9 times, and Asian Americans are 1.3 times, more likely than white Americans to develop kidney failure. People of Hispanic ethnicity are 1.5 times more likely to develop kidney failure than non-Hispanics.
Encouraging organ donation and supporting kidney transplants
Kidney transplantation is considered the best treatment option for people facing kidney failure because it can increase their chances of living a longer, healthier life. However, the number of people on the organ transplant waiting list is great — about 105,000 Americans are on the list, with 86 percent of those in need of a kidney. Many will die before they receive one because of the dire shortage of kidneys for transplant.
Improving early detection of kidney disease and addressing the unknown causes of kidney disease
Although 37 million Americans are living with chronic kidney disease (CKD), most of them do not know it because it has no symptoms in the early stages. Millions more individuals are at risk of developing kidney disease and are not aware of their risks. Anyone can get kidney disease, but some people are more at risk than others. Diabetes and high blood pressure are the most common causes of kidney disease. Having a family history of kidney disease, being over age 60 and being of a certain race or ethnicity can also increase an individual's risk for kidney disease. However, for a number of people living with kidney disease, the cause of their kidney disease is unknown. Identifying the root cause of a person's kidney disease, both early in the disease and as a life-preserving necessity, is important for making crucial treatment decisions.
Ensuring adequate funding for kidney research and promoting innovation
Kidney disease affects 37 million Americans — far more than many other diseases. Yet federally funded research for kidney disease has lagged compared with many other diseases. This has slowed innovation in the diagnosis and treatment of a disease that is the fastest-growing noncommunicable disease in the United States.
Fighting insurance discrimination against patients on dialysis
Health insurers systematically discriminate against low-income people living with ESRD who rely on charitable assistance to afford their health insurance premiums and access the health care they need to stay alive. Over the years, many insurance carriers have refused charitable premium assistance payments from AKF on behalf of people living with ESRD. These people living with ESRD, who are disproportionately members of racial and ethnic minorities, depend on AKF's federally-approved, 100% needs-based Health Insurance Premium Program (HIPP) to afford the premiums for their Medicare Part B, Medigap, Medicare Advantage, employer group health, COBRA and other commercial plans, including Qualified Health Plans (QHPs).
Supporting Medigap reform
Mostpeople with ESRD are eligible for Medicare even if they are under 65. But 19 states do not require health insurers to offer private supplemental Medigap plans to these younger Medicare beneficiaries. Without Medigap, ESRD Medicare beneficiaries face daunting out-of-pocket expenses for the 20% of medical care not covered by Medicare Part B and that is not subject to an out-of-pocket cap. Additionally, ESRD Medicare beneficiaries are required to have supplemental insurance in order to be added to the kidney transplant waiting list, as Medicare alone is not considered full coverage by transplant centers across the nation. Without access to Medigap plans, many ESRD Medicare beneficiaries under 65 cannot access kidney transplantation.
Ensuring access to high quality, patient-centered care for Medicare beneficiaries with kidney disease
As the Medicare benefit continues to evolve for ESRD beneficiaries and people with earlier stages of chronic kidney disease, access to coverage options, supporting patient choice in treatment options, supporting innovation, and improving care quality and patient education must be at the center.
Protecting and enhancing access to health coverage under the Affordable Care Act, Medicaid, and employer-sponsored insurance
The elimination of preexisting condition exclusions for health insurance under the Affordable Care Act (ACA) has enabled people with chronic diseases, including kidney disease, to enroll in private commercial health plans that provide comprehensive coverage. Medicaid, which provides health coverage for one in five low-income individuals, plays a vital role in helping enrollees prevent and manage chronic conditions such as chronic kidney disease and its leading causes, diabetes and hypertension. However, administrative actions over the last several years and the COVID-19 pandemic has jeopardized access to affordable, comprehensive coverage for many Americans.
Ensuring equity in the COVID-19 pandemic response
People with ESRD have experienced a disproportionate impact from COVID-19. Data from the Centers for Medicare and Medicaid Services (CMS) showed that at the end of 2021, Medicare beneficiaries with ESRD had the highest rate of hospitalization among all Medicare beneficiaries — a rate more than five times higher than the hospitalization rate for Medicare beneficiaries generally. The situation is even more dire for communities of color, who are disproportionately impacted by ESRD and are experiencing higher rates of COVID-19 infection, hospitalization and deaths.
Protecting patient access to needed medications; supporting lower prescription drug costs
Access to medically appropriate prescription drugs for people living with kidney disease must be preserved amid federal efforts to address the rising cost of prescription drugs. People with chronic kidney disease, kidney failure and kidney transplants rely on prescription drugs to manage their kidney disease and comorbidities. People need access to medically-appropriate prescription drugs that are effective and right for their individual situation, and they must be able to afford them.
Utilizing nutrition as a way to prevent and manage chronic diseases
Dietary interventions have been shown to be successful in managing and improving symptoms of chronic diseases such as heart disease, diabetes, and kidney disease.Nutritious food promotes good health. Access to fresh fruits, vegetables, and lean proteins can provide families and children alternatives to processed foods that have been linked to obesity, metabolic disease and low levels of HDL (high-density lipoprotein or "good" cholesterol).
Addressing the impact of climate change on people with kidney disease
Climate change poses a current and increasing threat to people's health, especially for people living with kidney disease or other chronic conditions. Rising surface temperatures, more frequent extreme weather events and heat waves, increased flooding, and other effects from climate change have a significant impact on health outcomes. Studies have indicated that extreme heat and heat-related illness can lead to acute kidney injury (AKI). For people with CKD or ESRD, extreme heat events can exacerbate their kidney disease and increase their risk of hospitalization. More frequent and more intense weather events that result in flooding, power outages and infrastructure and property damage can disrupt the care of people on dialysis, who may miss their dialysis treatments and increase their risk of adverse health events.
Our Legislative Priorities
Several important pieces of legislation have been introduced in the current Congress, and we are actively working to enact these bills that would affect kidney patients and their access to life-sustaining health care.
Keeping the memory alive
Fundraise for AKF
"I wanted to do something to honor my mom, and loved that my fundraiser could help kids with kidney disease go to summer camp." -Jose Ortiz, KidneyNation fundraiser
Support AKF anywhere, anytime — and have fun while doing it! Join an AKF 37 Mile Challenge. Pledge your birthday. Or create a fundraiser that's unique to you. We are here to support you along the way.