Ask the Doctor
Questions about kidney disease? Risk factors? Signs and symptoms? Are you concerned about yourself, a friend or family member? Ask Dr. Spry.
On November 15, 1950, Ada DeBold, and her husband Harry, called the first meeting of the Committee for Nephrosis Research. Several months earlier, Mrs. DeBold's infant son was stricken with nephrosis, a condition about which little was known and for which little could be done. Her determination not to succumb to the grim reality of her son's disease and her affluence were important elements which led to the formation of the National Nephrosis Foundation (NNF), the inaugural lay group destined to become the National Kidney Foundation, which was officially so named in 1964.
The organization's main purpose in the early years was to help victims of kidney disease and their families, and to raise money to fund research. Throughout the 1950s the Foundation distributed informational literature to the public in order to raise awareness about the dangers of kidney disease. At the same time, a paper entitled "How to Form a Chapter" was prepared and mailed to interested individuals and groups around the country. The first major national fund raising campaign took place in 1956 and was a complete success, raising a record $400,000. The Foundation was quickly gaining national recognition as an important health agency.
Everything changed in 1960 with a groundbreaking medical advance. The invention of the Teflon shunt made repeated access to a patient's blood possible. Thus, kidney failure could be treated with dialysis. Transplantation of kidneys from sibling donors was also proving to be very successful. Kidney failure was no longer considered a fatal illness, but a chronic disease—and helping patients with kidney failure then became the primary mission of the Foundation. Research became an essential component of the Foundation's work, and the first research fellowships were awarded in 1968.
As the Foundation grew, it became a vocal advocate for federal support of wide-ranging kidney disease programs. In the 1960s the Foundation was instrumental in securing the first federal funds ever earmarked for kidney programs—specifically $6.4 million to go towards a variety of initiatives. The money was used to establish training centers for the education of doctors and nurses in the treatment of patients with kidney failure; for professional and public education, including screening programs; research into the cause and nature of kidney diseases; and the development of more effective dialysis equipment.
That primary focus on service for dialysis and transplant patients lasted for more than 20 years. It included a milestone achievement in 1972 with the passage of legislation that provided federal government financing for nearly all Americans with kidney failure. This law established an End Stage Renal Disease (ESRD) benefit within Medicare, the federal program to cover medical care for the elderly and disabled. It was, and continues to be, the only categorical coverage for any disease in the United States. This federal program marked the beginning of an ongoing government relations component to the Foundation's service and research mission. Throughout this period, NKF continued to develop its community base by organizing and supporting Affiliates throughout the country, which raised money and conducted local programs.
The 1970s witnessed a substantial increase in NKF's commitment to its life-saving research. By 1975, NKF's annual research funding passed the $1 million mark, and in 1980 research grant programs were instituted by NKF's Councils for nurses, dietitians and social workers. At the same time, a stronger emphasis on encouraging organ donation, convening of "consensus conferences" on critical issues and raising public awareness became important functions of the NKF national organization. It developed a large library of published material for a wide variety of audiences, and positioned itself as the source for information and help on numerous issues related to kidney disease, especially dialysis and transplantation. It also created simple, informative brochures and communication vehicles for patients and professionals. The American Journal of Kidney Diseases (AJKD) was launched by NKF in 1981 and has become the go-to resource for cutting-edge clinical science. The work of the NKF became even more prevalent when, in 1983, the availability of new drugs enabled thousands more to benefit from kidney transplantation therapy.
The Foundation's ability to develop and market major programs and to influence government policy continued. NKF was a leader in crafting and passing the National Transplant Act in 1984. Around this time, the Foundation began to work with corporate partners and obtain the funding needed to develop sophisticated programs. Though corporate money made the programs possible, NKF's high standards made sure all programs were unbiased, medically sound and usable without any sponsor influence. These programs continue to improve the lives and health of kidney patients and their families. In 1990, the NKF was asked to organize and rejuvenate the US Transplant Games, an extraordinary, Olympic-style event held every two years where thousands of people come together to create public awareness that transplantation works and that more organ donors are needed.
In 1995, the NKF was responsible for developing the first broadly accepted clinical practice guidelines in nephrology, which eventually became known as KDOQI—Kidney Disease Outcomes Quality Initiative. The first guidelines were published in 1997, and today there are 12 guidelines, which have made a major difference in the quality of care for kidney patients in the U.S. and worldwide. The 2002 Chronic Kidney Disease clinical practice guideline established the landmark "Five Stages of Kidney Disease." In addition to publications and the scientific methodology of guideline development, NKF created educational and implementation tools and programs that could be used by physicians and medical professionals as well as by patients and their families. Many of these initiatives are the direct result of NKF's commitment to research. By the end of the 1990s, NKF's annual research funding passed the $3 million mark.
One of NKF's great achievements was the development of the largest and most effective detection program for kidney disease ever launched in the United States. First tested in 1997, the Kidney Early Evaluation Program (KEEP) was designed to find kidney disease at its earliest stage possible. The 100,000th participant was screened in November 2007, and 30,000 at risk individuals will be screened in 2008.
NKF's interest in promoting guideline development and implementation has expanded globally with the establishment of "Kidney Disease: Improving Global Outcomes" or KDIGO. In 2002, leaders of NKF and KDOQI asked prominent nephrologists from around the world their opinion on the need for a global organization to bring the world's nephrology community more closely together in regard to practice guidelines. The response was a clear message that such an effort would be useful and that NKF should lead the initiative. In 2008, KIDGO issued its first guideline covering Hepatitis C in Chronic Kidney Disease in Kidney International.
One of the most valuable assets of NKF to the worldwide kidney community is the "Kidney Learning System," or KLS, established in 2003. This is NKF's educational development entity. All of NKF's educational programs, tools and learning opportunities are developed through KLS, which has an extensive and ever-growing library of resources available for patients and professionals in multiple formats. The goals of KLS are to further public awareness about risk factors and the Five Stages of Chronic Kidney Disease, as well as to provide educational resources and support to healthcare professionals. It completes and consolidates NKF's evolution as a medical education provider of the highest quality. NKF is able to offer Continuing Education Units (CEU) and Continuing Medical Education Credits (CME) to health care professionals, having received accreditation from the Accreditation Council for Continuing Medical Education (AACME).
In its ongoing efforts to strengthen and unify the voices of the more than 26 million Americans with chronic kidney disease, the NKF established an advocacy program in 2005. Its aim is to educate, empower, and encourage powerful, effective advocates on health issues and public policy initiatives and includes the diverse perspectives and wealth of expertise provided by NKF's four Constituent Councils. The Patient and Family Council ensures that people with kidney disease receive the best care possible and promotes patient and family involvement in life enhancing programs. The National Donor Family Council serves organ donor families and works to increase the effectiveness of the organ recovery process. The Living Donor Council works to represent living donor views and provides educational and supportive resources to living organ donors and potential donors. Finally, the transAction Council promotes a better quality of life for transplant recipients by providing support, information and programs on education, fitness and research.
NKF's advocates learn to effectively communicate their personal stories and to participate in activities related to the public policy initiatives the Foundation addresses. Members establish and maintain contact with Members of Congress and state and local officials through phone calls, letters, and personal visits. To ensure that patient voices are being heard, NKF launched the Take Action Network in 2007. This e-advocacy system allows people to immediately email their representatives in Congress when urgent legislative and policy issues arise. Nearly 8,000 messages were directly delivered to Congress through the network in 2007.
NKF will continue to grow and conduct stronger and more effective programs throughout the United States and around the world. Since 1968, NKF kidney research grants have exceeded $73 million, and in 2008 NKF announced plans to double the annual research budget over the next five years. This includes support for Research Fellowships, Young Investigator Grants and Clinical Scientist Awards, in addition to the research grants provided by local NKF offices and by NKF Professional Councils, including the Council of Nephrology Social Workers, the Council of Nephrology Nurses and Technicians and the Council on Renal Nutrition.
In order to more effectively serve all of our constituents, NKF is undergoing a major reorganization. In 2007, the transformation from an Affiliate-based structure to a centralized organization began. This shift enables the local volunteers and staff to focus on critical activities such as delivering programs and fund raising, while the National headquarters assumes most administrative responsibilities, including finance, information technology and human resources. NKF will emerge as a stronger, unified and more effective organization working towards fulfilling our mission.
The vision of the NKF is to enhance the lives of everyone with, at risk of or affected by kidney disease. The Foundation realizes there is still much more to do. Throughout our history, NKF placed patients first and still does.