Advocating for kidney cancer patients “on” Capitol Hill

By Curtis Warfield, Kidney transplant recipient and Kidney Advocacy Committee advocate

On Wednesday and Thursday Aug 12 and 13, 2020, I had to pleasure to once again speak to my members of the US Congress and their staff about kidney health policy priorities. NKF partnered with KidneyCan on their District Days. KidneyCAN is a leading kidney cancer awareness group for the kidney cancer patient community.

I admit that while I had heard of kidney cancer, I was not too familiar with this disease. I went into the training seminars with an open mind to learning more about kidney cancer and to be a helpful advocate towards this cause. More than 73,750 people this year alone will be diagnosed with kidney cancer this year; more than 15,000 patients will die. However, more that 15.5 million Americans are alive today thanks to the kind of cancer research for which we were advocating.

Due to COVID-19, the training and all meetings were held virtually. 117 advocates represented 26 states from 8 different organizations. The Advocacy Education Seminar was held a week prior to provide training for Congressional meetings. NKF’s Matt Fitting along with Kimberly Serota of American Urological Association (AUA), and KidneyCan President and Co-Founder Bryan Lewis gave excellent presentation on the current legislative landscape and explaining what the “Asks” from Congress. Our four “Asks” were:

1) $3 billion increase in funding for the National Institutes of Health and National Cancer Institute.
2) $50 million for the Kidney Cancer Research Program (part of the CDMRP).
3) Continue to support legislative initiatives that contribute to robust, sustainable funding for medical research.
4) Continue to listen to the patient perspective on legislative policy matters.

The top two asks were the most important. Increase funding to the National Institute of Health (NHI) and National Cancer Institute helps in cancer research. Almost every major medical breakthrough in cancer can be traced back to NCI or NIH in the past 50 years. The 50 million for Kidney Cancer Research is for annual funding specifically for kidney cancer. Before 2015, there was no known money designated directly for kidney research.

My first meeting was supposed to be with Congressman Carson and his legislative assistant (LA). Unfortunately, Representative Carson had a last-minute call out and wasn't able to attend. After the introductions with his LA, I shared the mission of KidneyCan and the facts of kidney cancer.  During the “asks” portion, I related how NHI has helped in kidney disease research along with my experience being on CDMRP panels and how effective they have been with research in kidney health. I also thanked him for the congressman’s support of the past bills that he as co-sponsored on kidney disease.

My meeting was with Senator Braun and his staff would be the only legislator meeting I had. I was paired with two patients with different types of kidney cancer. Their stories are amazing and they added that relatable personal story that is so important in these meetings. Senator Braun was very receptive during our meeting and knew the importance of funding NIH and CDMRP.  He mentioned about his recent cosponsoring of Living Donor Protection Act and the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. This allowed me to relate my experience into the meeting and to personally thank the senator for his support for better kidney health.

Senator Todd Young was also called out and unable to meet but we were able to meet with one of his LAs. The assistant with was courteous and open to hearing us. She didn’t appear to have much knowledge about kidney cancer, giving us an opportunity to educate her on the importance of improved kidney health policies.

Since then, I followed up with thank you emails and social media posts. These too goes a long way with getting your information into the proper hands!

I was excited to have this chance to work with KidneyCan and NKF on behalf of the kidney cancer community. Since I started advocating, it is always exciting to have the chance to help educate my legislators and their staff on Capitol Hill or in the district office. It gives me a chance to help those who are unable to have a voice and to give forward to the gift of life that my living donor gave to me.  If you are interested in becoming an advocate yourself, email nkfadvocacy@kidney.org, and join us in our mission!