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Funding Kidney Cancer Research: A Story of Persistence and Luck

It is said that in order to succeed one must be persistent and be prepared to take advantage of opportunities when they arise. ACKC’s decades-long effort to obtain Federal funding for kidney cancer research confirms the wisdom of that approach. Here’s the story.

In 2001, I learned that I had a 7 cm malignant tumor on my left kidney. It was diagnosed incidentally, and fortunately, wasn’t metastatic. So, although I lost a kidney, I survived the disease. In 2002, I attended a kidney cancer conference hosted by another organization in order to learn something about this disease about which I was completely ignorant prior to my diagnosis. One thing that I learned was that if the cancer turned metastatic, there was only one FDA-approved therapy for kidney cancer, Interleukin-2, which not only was highly toxic but also had a very low success rate. I also learned that our government did not invest nearly enough money into finding new therapies, especially as compared to other cancer types, making it near the bottom in research funding. So, I concluded that if the cancer returned, I probably wouldn’t survive.

The next year, I attended a lobbying conference in Washington, DC, sponsored by the same organization. They had three “asks” of Congress: (1) Medicare should reimburse oral therapies equal to what they reimburse infusions; (2) make it unlawful to purchase medicines in Canada; (3) raise the NIH cancer funding across the board. The first ask sounded fine to me. The second one puzzled me – why shouldn’t I be able to buy prescription medicines for a cheaper price than those sold in the U.S.? As for the third ask, I didn’t have to be a mathematician to understand that if you increased the cancer budget by, say 5% across the board, kidney cancer, sitting near the bottom of the list, would receive 5% more research dollars, but would still be far behind the other cancer types.

I decided then and there, to organize a group of patients and survivors to lobby specifically for increases in the government’s kidney cancer budget. I asked people sitting around the table to join me and a few people signed up, and my first bit of luck, one of them was the sister of Ed Koch, the famous former mayor of New York City for 12 years.

Establishing Action to Cure Kidney Cancer (ACKC)

The following year, after gathering a few more recruits we formed our own organization, Action to Cure Kidney Cancer. Mayor Koch introduced us to Senator Chuck Schumer (D-NY) and Representative Peter King (R-NY), who co-sponsored a Dear Colleague letter to their fellow senators and representatives asking them to support kidney cancer funding.

After sending letters to constituents and going to Washington to meet with legislators and health aides, we were successful in having Congress add kidney cancer to the Department of Defense (DOD)’s Peer Reviewed Cancer Research Program (PRCRP), joining a dozen other cancers which were eligible to receive DoD grants. In FY2006, Maria Czyzk-Krzeska, from the University of Cincinnati, was the first winner of a kidney cancer grant, doing genetic research in clear cell cancer.

Funding History

From FY2006 through FY2016, 13 kidney cancer investigators received $13 million in grants from the DoD. But we continued to lobby each year for kidney cancer to have its own separate funding through the Congressionally Directed Medical Research Program (CDMRP) which is also under the purview of the DOD. In late 2015, I received an email from a woman whose husband was diagnosed with metastatic kidney cancer asking for a reference for a kidney cancer oncologist. She said, by the way, “my husband’s aunt is Nita Lowey.” Rep. Lowey, from Westchester County, NY, was then the Ranking Member of the House Appropriations Committee. Patricia Todd, ACKC’s Development Director, asked a good friend of hers, a constituent of Rep. Lowey, to set up a meeting for us. Rep. Lowey knew as much about kidney cancer as I did when I was diagnosed with the disease 14 years earlier, so we gave her a tutorial, explained that ACKC was advocating for direct funding from the CDMRP program, and asked if she could help us. She replied that she was one of the three women in the House to get the CDMRP started in 1992, funding breast cancer research, and said that she would do the same for kidney cancer. In 2016, Rep. Lowey made kidney cancer funding her priority ask of the Appropriations Committee, and the Kidney Cancer Research Program (KCRP) was approved by Congress in FY2017 and seeded with $10 million. Funding of KCRP has proceeded as follows: In FY2017, $10M. In FY2018, the KCRP was budgeted $15M. In FY2019, $20M. In FY2020, the KCRP’s budget was doubled to $40M and FY2021 and FY2022 the KCRP was budgeted $50M.

To date, the total funding for the PRCRP and the KCRP equals $198 million, and through FY2020 both programs have funded over 150 awards for kidney cancer research. Nita Lowey retired from Congress last year, but the KCRP continues to be funded at the $50 million level.

ACKC has accomplished many things but we are most proud of our success in obtaining direct Federal funding for kidney cancer.