Advocating with one voice for kidney cancer research.
Kidney cancer is one of the top 10 most common cancers affecting people in the US. Over half a million people live with kidney cancer and about 79,000 people are expected to be diagnosed with it in 2022. However, it remains underrecognized and underfunded. Although treatment options for people impacted by kidney cancer have expanded tremendously in the past few decades, the majority of those with kidney cancer do not respond to treatment, or don’t respond for long, and serious side effects remain common. That is why the Kidney Cancer Association continues to advocate for new treatment options, treatments that cause less intense side effects, methods for early cancer detection, biomarkers to guide treatment decisions, and overall better quality of life. Join our efforts!
Since 2014, the KCA has been a proud member of the Defense Health Research Consortium (DHRC), a diverse community of patient and research advocacy organizations, medical provider groups, veterans’ organizations, and private sector interests with the single purpose of protecting and preserving funding for the Congressionally Directed Medical Research Programs (CDMRPs), which is administered by the US Congress’s House Committee on Appropriations in the annual Defense Appropriations Act. Kidney cancer has a designated research program – the Kidney Cancer Research Program (KCRP) – with its own funding allocation through the CDMRP. The KCRP was formed in 2016 with a $10 million allocation. Because of the committed advocacy of the kidney cancer community, the allocation in 2021 was $50 million! Below, you can read a few examples of the DHRC’s recent work.
The current federal funding for the KCRP is not enough. Use your voice and tell your elected representatives why kidney cancer matters to you and how they can help unlock the cure by increasing funding for the KCRP and other institutions like the National Institutes of Health.
Create a unique, personalized fundraiser to share with family and friends to easily raise awareness about kidney cancer and work together to support kidney cancer research through the KCA’s annual grant program. The sky is the limit for how you choose to raise funds!
KCA Ambassadors are passionate about kidney cancer and about sharing their passion with others. There are lots of different ways you can get involved – take your interests and skills, and Orange Up!
A History of Advocacy
The Kidney Cancer Association has a strong history of advocating for the needs of the kidney cancer community, starting with founder Eugene P. Schonfeld.
In 1989, Schonfeld was diagnosed with renal cell carcinoma. At the time, aside from surgery, there were no treatments for kidney cancer and a diagnosis meant facing a limited future.
Together with a small group of small group of doctors and fellow patients, Schonfled founded what would become the Kidney Cancer Association in Chicago in 1990. It was the first group – and remained the only such group until the mid-2000s – to focus on renal cancer and bring together key stakeholders for the express purpose of moving the needle in kidney cancer care and research in the hope of better lives for those with the disease.
Over the next several years, Schonfeld traveled around Illinois, and eventually to other parts of the US, as the number of kidney cancer support groups grew in strength and activity.
In the early 1990s, Schonfeld spoke often before Congress, Senate, health panels, and other groups about struggles people with kidney cancer faced.
His pioneering advocacy brought attention to a variety of issues beyond the scope of his own disease. These issues included high medical costs and bureaucracy in the US healthcare system. He was particularly forceful in describing the lack of treatment options for kidney cancer and the significant harm that delays in new treatment approvals can cause patients.
When interleukin-2 was shown to have an effect on kidney cancer, Schonfeld pushed the FDA relentlessly to approve IL-2 for kidney cancer.
Thanks, in part, to his efforts, the FDA approved IL-2 in 1992, the first-ever approved treatment for kidney cancer. Later, in 2005, the FDA approved sorafenib, the first oral chemotherapy for kidney cancer.
Following Schonfeld, multiple groups also emerged over time that raised awareness about kidney cancer, advocated for increased research funding, and offered support and information, strengthening the collective voice of those impacted by the disease.
The combined efforts that led to this increased awareness and funding set the stage for major advances in the scientific understanding of kidney cancer and a subsequent cascade of new drug approvals through the late 2010s.
Today, kidney cancer has over a dozen approved treatments for kidney cancer. Clinical trials of new treatments and new combination therapies expand kidney cancer patients’ options even wider.
Ultimately, after several recurrences, Schonfeld died of metastatic renal cell carcinoma in 1997. During his life, Schonfeld fought hard for scientific and medical advances, was an advocacy pioneer, and helped change the landscape for people impacted by kidney cancer.
There is still more to be done, but Schonfeld’s efforts to learn about his own disease, gather the best minds to work together to find solutions, and encourage those affected by kidney cancer to support one another continue through the Association.
The Kidney Cancer Association is a global community dedicated to serving and empowering patients, and leading change through advocacy, research, and education in order to be the universal leader in finding the cure for kidney cancer. Please contact us to learn more about kidney cancer or to get involved with our mission.
Kidney Cancer Association
9450 SW Gemini Drive #38269
Beaverton, OR 97008-7105
Telephone & Fax
USA: (800) 850-9132
International: +1 847 332 1051
KCA Patient Navigator Program
Kidney Cancer Association
2777 Allen Parkway Suite 424
Houston, TX 77019
207 – 1425 Marine Drive
West Vancouver, BC
Canada V7T 1B9
Unit 5114 P.O. Box 6945
London W1A 6US