2020 marks the Kidney Cancer Association’s 30th anniversary! Founded in 1990 by a small but committed group of patients and doctors in Chicago, we’re celebrating huge milestones and advances in research, in kidney cancer care and treatment, and in advocacy.
Over the past 30 years, the KCA has been a part of groundbreaking medical research, patient support, and community involvement. Scroll through our major achievements and milestones.
Dr. Nicholas Vogelzang, an oncologist at the University of Chicago, begins having small local gatherings of people with kidney cancer, families, and doctors.
“There was no available treatment for kidney cancer patients in the 80s – literally nothing. It dawned on me that these patients needed a community, a place to share their war stories.” – Dr. Nicholas Vogelzang, KCA Board of Directors
Eugene P. Schonfeld, a kidney cancer patient who attended several support meetings at the University of Chicago, collaborates with Dr. Nicholas Vogelzang at the University of Chicago, and others to form the National Kidney Cancer Association, the organization that becomes the Kidney Cancer Association.
“Together, [Eugene P. Schonfeld and Nicholas Vogelzang] envisioned a patient-centric organization that would provide information and influence the development of treatment. The organization would influence, ultimately, the direction of care for this treatment.” – Dr. Ronald Bukowski, KCA Board of Directors and Medical Steering Committee
In the early 1990s, Eugene P. Schonfeld advocated in earnest in Washington D.C., speaking several times before the Senate, Congress, and various committees about better care and treatment options for people with kidney cancer. In particular, he stressed the need for the FDA to approve interleukin-2 (IL-2), a systemic treatment for metastatic renal cell carcinoma, which was the only treatment at the time that had an effect on kidney cancer. On September 19, 1994, Schonfeld spoke on a healthcare reform panel in Washington, D.C. about the need to minimize bureaucracy so that people who needed to access proper healthcare could.
Interleukin-2 becomes the first treatment for kidney cancer approved by the FDA.
“At the end of the 1970s and 80s, the only thing for kidney cancer was chemotherapy, and that didn’t do anything. With the advent of interferon and recombinant DNA technology, kidney cancer became a testing ground for all the important therapies that ultimately became commercially available. It was a marriage of advocacy, science, and industry.” – Dr. Robert Figlin, Cedars-Sinai Medical Center
Eugene P. Schonfeld dies at age 54 from metastatic kidney cancer.
“His passion and his commitment to a disease that ultimately would take his life at a time when no one else was interested was a testament to his energy, his vision, and his ability to bring people together that thought about [kidney cancer] differently from the mainstream.” – Dr. Robert Figlin, Cedars-Sinai Medical Center
The first International Kidney Cancer Symposium is held in Chicago, Illinois. The IKCS meetings, held each November, become an annual opportunity for physicians, researchers, academics, and industry professionals from across the globe to exchange ideas that direct the future of kidney cancer research and treatment in the ultimate pursuit of a cure.
Sutent (sunitinib malate) is FDA approved to treat kidney cancer.
The first European International Kidney Cancer Symposium (EIKCS) is held in Madrid, Spain, expanding the KCA’s efforts internationally.
Torisel (temsirolimus) is FDA approved to treat kidney cancer.
“The technology of cancer grew in parallel with the KCA. We would have had a mission but no results, and it was results that helped drive the KCA’s growth in parallel with academics, industry, advocacy, and community-based commitment.” – Dr. Robert Figlin, Cedars-Sinai Medical Center
Keytruda (pembrolizumab) is FDA approved to treat kidney cancer.
Yervoy (ipilimumab) + Opdivo (nivolumab) combination therapy is FDA approved to treat kidney cancer.
The KCA establishes new headquarters in Houston, Texas.
The 2019 Nobel Prize in Medicine is awarded to Dr. William G. Kaelin of the Dana Farber Cancer Institute and two others, for pioneering work based on genetic mutations associated with kidney cancer. Read article
Patient & Caregiver Advisory Council formed with the mission to serve as the voice of the patient and provide the vital link between the patient community and the Kidney Cancer Association.
Inaugural Think Tank: Coalition for a Cure held before IKCS 2019. Top kidney cancer experts gathered to identify key areas of unmet need and how to address those needs through collaborative research.
2020 marks the KCA’s 30th anniversary.
The KCA’s 74K Challenge in June raised $74K in honor of the 74,000 people estimated to be diagnosed with kidney cancer this year.
In 1989, Eugene P. 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.
Meanwhile, Dr. Nicholas Vogelzang, an oncologist at the University of Chicago who had developed a reputation for treating kidney cancer patients, had been hosting supportive gatherings of kidney cancer patients, families, and healthcare professionals locally in and around Chicago.
Schonfeld, Vogelzang, and others formed what would become the Kidney Cancer Association 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 would travel 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.
There are lots of memorable moments over the course of a kidney cancer journey. Do you have a video of one of yours? We’d love to see it! We’re looking for home videos and photos to help us celebrate the KCA’s 30th Anniversary. These may appear on our blog, social media, or in a special 30th anniversary video. If you have questions or would like to share, reach out to us at [email protected].
By donating to the KCA’s Patient Assistance Fund, you can help reduce the financial distress that patients and their families face during their cancer journey. Thank you for your support!