We fight kidney disease on all fronts as the nation’s leading kidney nonprofit. We work 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 transplant. Through programs of prevention, early detection, financial support, disease management, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF.
We live our values every day: Putting patients first... Leading with integrity… Being a valued partner... Promoting team excellence… Increasing public awareness of kidney disease.
When hemodialysis was developed, it was revolutionary: it offered people with kidney failure a chance at survival. But only the very wealthy could afford to pay for dialysis treatment; the rest went before “life or death committees” to determine who would receive treatment. Many patients went bankrupt trying to pay for their life-sustaining care, and people saw the need for a charity to help with costs.
In 1971, a small group of friends founded the nonprofit American Kidney Fund to help dialysis patients afford the cost of care. Back then, kidney disease was a rare condition, most often caused by congenital or hereditary conditions.
In just four decades, kidney disease has emerged as one of the leading threats to our nation’s health. As the number of cases has grown, so has the need for our programs and services. We have helped more than 1 million low-income dialysis patients access medical treatment since our founding. Our grants for health insurance premiums have allowed these patients to maintain health insurance coverage, enabling them to receive life-saving dialysis care through the modality and setting that they and their physicians deem most appropriate, whether it is in-center hemodialysis, home hemodialysis or peritoneal dialysis. Our other grant programs have allowed these patients to pay for transportation to dialysis, purchase medications and nutritional supplements, and afford many other treatment-related expenses.
We have expanded the public’s access to vitally needed information about kidney disease prevention. We have funded clinical research training to advance the field of nephrology. We have provided screening services to tens of thousands of underserved at-risk individuals nationwide. We have developed advocacy outreach, public policy efforts, and strategic partnerships to support improvements in the quality of care for people living with kidney failure, and to advance awareness and prevention of chronic kidney disease.
Yet as we look to the next four years, we confront the reality that the challenge of kidney disease is greater than ever.
When the American Kidney Fund was founded, there were fewer than 20,000 Americans with kidney failure. Today more than 600,000 Americans have kidney failure. Kidney failure is an expensive condition to treat and posts an enormous financial burden on the nation and on patients. The Medicare program that covers most people with kidney failure cost taxpayers more than $34 billion in 2011, 6.3 percent of the total Medicare budget, though people with kidney failure constituted only about 1 percent of the total Medicare population. With kidney failure treatment costing private insurers an additional estimated $14.9 billion that same year, the total cost of kidney failure treatment totaled nearly $50 billion.
While the number of people with kidney failure is enormous, the number of people with its precursor, chronic kidney disease, is a staggering—37 million Americans. Diabetes and hypertension cause two-thirds of all cases of kidney disease.
One out of every 3 Americans is at risk for kidney disease, and kidney disease is now among the top 10 causes of death in the United States. Nine out of 10 people with early to moderate kidney disease don’t know they have it, putting their health in jeopardy.
These statistics point to the incredible need that exists for the American Kidney Fund’s programs, services and leadership. Despite the enormous toll this disease is taking on our nation’s health and economy, there is hope.
Chronic kidney disease is preventable in most cases. Increased awareness of risk factors is critical to preventing new cases.
For those who already have chronic kidney disease but are unaware, early detection can make all the difference—it is possible to slow or stop its progression and avoid kidney failure or other serious complications.
And for Americans who are living with kidney failure, better health outcomes and improved quality of life are possible with effective treatment-related financial support that ensures access to quality care, and with an intensified focus on strengthening public policies and programs to support the needs of these patients.
The American Kidney Fund’s 2015-2018 Strategic Plan is our roadmap that will allow us to tackle the challenge presented by this common, serious and widespread disease. The next four years present an enormous challenge, but even more importantly, an enormous opportunity. We will continually evaluate our progress, adjust our course as needed, and forge meaningful partnerships with people and organizations who share our commitment to the cause. Together, we will help people fight kidney disease and live healthier lives.
Critical focus areas
The AKF Strategic Plan contains two critical focus areas for our efforts over the next four years.
The first is to increase the proportion of persons with CKD who know they have impaired renal function, or high-risk factors for CKD, and by so doing, contribute to a reduction in kidney disease-related deaths and disabilities.
This objective aligns with goals contained in the U.S. Department of Health and Human Services’ Healthy People 2020 initiative. Specifically, the national goal is to increase by 4 percentage points the number of people ages 45 and older who have CKD and are aware they have reduced kidney function. The government measures awareness with the NHANES survey, which asks, “Have you ever been told by a doctor or other health professional that you had weak or failing kidneys?”
CKD is a progressive condition. It has no symptoms in the early stages. Individuals with early CKD can only become aware of having CKD if they are tested for it. Early detection is the key to managing its progression and preventing CKD from leading to kidney failure, cardiovascular events, or death. Individuals with risk factors must know about CKD and their risk so they can request screening; and healthcare providers must test individuals who are at risk and explain to them their results.
In its earliest stage, stage 1, kidney function is slightly impaired. In its final stage, stage 5, kidney failure has occurred and the individual must have dialysis or transplant to survive. Between 1999 and 2004, federal survey data showed that only 7.3 percent of adults 45 and older with CKD stages 1-4 were aware they had the disease.
Achievement of this Healthy People 2020 awareness objective will mean that by 2020, 11.3 percent of adults 45 and up who have CKD will be aware they have it. On a practical level, that means fewer people will experience cardiovascular events from undiagnosed kidney disease, fewer people will show up in emergency rooms with sudden symptoms, only to be told they are in kidney failure, and fewer people will die from CKD. More people will work with a physician to manage their early kidney disease, slowing or stopping its progression. More people will be able to prepare appropriately for dialysis if it is needed, and thereby have a greater likelihood of positive health outcomes.
For all of these reasons, it is critical to increase the number of people who are aware they have CKD, or who know that they have risk factors for the disease and should be tested. A nationwide effort is necessary to achieve this objective. No organization can do it alone. The American Kidney Fund will contribute to achievement of this Healthy People objective in several important ways:
- Public awareness efforts, including media campaigns and community events, to alert individuals with diabetes, hypertension, and other key risk factors that they need to be tested for CKD;
- Health education and kidney health screenings for individuals who have risk factors for kidney disease; and
- Professional education for primary care practitioners to encourage screening of individuals with risk factors, and to encourage practitioners to consistently report test results and implications for health to patients.
Our second focus area is to lead a long-term, strategic advocacy effort that engages patients, caregivers, strategic partners and others who will collaborate with AKF in a variety of ways to increase awareness and understanding of kidney disease among the public, media and policymakers.
This effort begins with engaging the people we were founded to serve: individuals who have kidney failure, and in particular those who are on dialysis. This engagement effort will include patient education, with a focus on adherence, and it will include efforts to grow our patient grant programs in order to provide greater support to patients who need help accessing health care. We will engage patients and their loved ones to share their personal experiences with the media and policymakers—putting a face on kidney disease and highlighting the urgency of our mission.
Awareness and understanding of kidney disease is generally very low among the public. For example, minority populations are affected disproportionately, with African Americans nearly 4 times more likely than Caucasians to experience kidney failure. Yet in a 2008 study of urban African American adults, less than 3 percent named kidney disease as an important health problem, compared with 61 percent who named hypertension and 55 percent who named diabetes. In 2011, the American Kidney Fund surveyed 1,000 adults nationwide who had a loved one with either hypertension or diabetes, and found that 85 percent and 69 percent, respectively, did not name hypertension or diabetes as a cause of kidney disease.
By increasing public awareness and understanding of kidney disease, we can have an impact on Americans’ awareness of their risk factors and we can influence early detection of CKD, which leads to better health outcomes. By increasing media and policymaker understanding and awareness of the widespread impact of this disease, we can elevate its profile and ensure that people who are at risk are hearing about it not only from us, but from key influencers. And by ensuring that the media and policymakers understand the serious impact of kidney disease and kidney failure, we will effectively advocate for legislative and policy measures that will help people with all stages of kidney disease, including kidney failure, fight the disease and live healthier lives.
We can achieve these goals with a strategic advocacy effort that engages key stakeholders who will amplify our vital messages. We will employ the following strategies:
- Developing our nationwide Advocacy Network, by giving members the platform and educational tools they need to educate their friends, neighbors, communities and media about kidney disease;
- Engaging our strategic partner organizations by providing kidney disease educational tools that they may use with their own constituents, and by enlisting their support to help us achieve key policy or legislative goals; and
- Working with these key stakeholders to influence media and policymaker awareness and understanding of kidney disease.
The critical focus areas we have outlined above will provide the guiding structure for our work over the next four years. Our annual strategic operating plans will provide the metrics and tactics related to these critical focus areas, as well as for all of our organizational objectives.
Goal: Strengthen and expand AKF’s support for people living with kidney disease.
Living with kidney failure presents enormous physical and financial burdens. There are two treatments for kidney failure: dialysis or transplantation. With more than 100,000 people awaiting a transplant, and the wait often years long, most people with kidney failure depend on dialysis for survival. Living with this chronic illness and having to spend many hours per week receiving treatment means that for most dialysis patients, employment is not possible. In fact, fewer than 20 percent of working-age dialysis patients in the nation are employed. Many dialysis patients need charitable assistance to afford their treatment-related expenses, and the American Kidney Fund will continue to be the nation’s leader in providing comprehensive programs of financial assistance to kidney patients through the achievement of the following objectives:
- Continue to lead the field by designing and implementing programs to address the treatment-related financial needs of kidney patients, and to assess and respond to emerging financial needs among the dialysis patient population.
- Maintain high satisfaction among grant recipients as well as those who contribute to American Kidney Fund patient assistance programs and services.
- Maintain the American Kidney Fund’s position as the partner of choice for existing and new patient assistance programs supporting patients with kidney disease.
- Monitor patient needs and develop programs and services to support these needs in order to improve health care outcomes
Outreach and education
Goal: Promote better health by providing health outreach and health education to people living with kidney disease and to people who are at risk for the disease.
CKD is one of the top 10 causes of death in the United States, yet measured awareness of this condition is very low, and the vast majority of Americans do not know that diabetes and high blood pressure cause CKD. In addition, 9 out of 10 Americans with early to moderate CKD don’t know they have it. With early diagnosis and treatment, individuals can slow or stop the progression of CKD. We will work toward the following objectives over the next four years to promote better health among individuals living with, or at risk for, kidney disease:
- Contribute to achievement of the U.S. Department of Health and Human Services Healthy People 2020 objective to increase the proportion of persons with CKD who know they have impaired renal function, or high-risk factors for CKD, and by so doing, contribute to a reduction in kidney disease-related deaths and disabilities.
- Contribute to efforts that reduce health disparities, create social and physical environments that promote good health, improve health outcomes and increase health equity for people living with all stages of chronic kidney disease, including kidney failure.
- Increase CKD awareness and health education by engaging in activities that promote kidney disease prevention, and provide education and outreach targeted toward both the general public and toward people who are at higher risk for CKD, or who may already have the disease but are unaware.
- Educate health care professionals to support improved quality of care and healthy behaviors for kidney patients.
Goal: Develop a strong and visible brand that engages key audiences in the fight against kidney disease.
Kidney disease poses such an enormous challenge to our nation that it is critical for stakeholders to work together to increase awareness and develop solutions. By continuing to develop our brand awareness, we will attract increased engagement from a wider range of individuals and organizations who share our commitment to the cause. Over the next four years, the American Kidney Fund will bring together stakeholders to lead a collaborative effort that will elevate the importance of kidney disease in the public’s mind, and that will address the challenges of kidney disease from a public policy perspective. Our objectives include:
- Build awareness of the American Kidney Fund’s brand as a leading nonprofit helping people fight kidney disease and live healthier lives through financial support, education, awareness and advocacy.
- Lead a long-term, strategic advocacy effort that engages patients, caregivers, strategic partners and others who will collaborate with AKF in a variety of ways to increase awareness and understanding of kidney disease among the public, media and policymakers.
- Work collaboratively with others in the renal community to support public policies that improve access and quality of care for kidney patients, as well as policies supporting programs that result in improved treatment and prevention of kidney disease through increased awareness, education, and kidney disease research.
Goal: Secure increased philanthropic support and develop our organizational infrastructure to meet the challenges of kidney disease.
To ensure success over the next four years, we will increase our level of support from individuals, corporations and foundations who share our commitment to helping people fight kidney disease and live healthier lives, and we will strengthen our infrastructure so that our organization can most effectively deliver programs and services, through the following objectives:
- Build relationships and partnerships with existing and new donors to provide financial support for our programs and services that serve individuals with, and at risk for, kidney disease.
- Continue to develop our top-quality workforce and infrastructure to advance all organizational priorities in our mission to support those with, and at risk for, kidney disease.