Research Advocacy

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.