Kidney Champion Advocating for kidney cancer patients “on” Capitol Hill

 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.

Curtis Warfield on Capitol Hill During the 2019 Kidney Patient Summit

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!

MOVING FORWARD - Why I Advocate

I’m moving forward 2020 and beyond. I’m looking at life in an optimistic way.  I stop making resolutions a long time ago and make goals. I’m learning to live and keep moving day to day knowing things and circumstances can and not feeling defeated because of changes. A resolution is a firm decision which when not accomplished is looked on as a failure. A goal is something you aim to achieve and you have the ability to alter how to achieve your goal so that you don't fail. With a few weeks of 2020 are under my feet, things have started well even with those changes in my "planned" day. I continue to "move forward' in my 2020 goals which have made already made for ‘alterations’ due to recent new opportunities presented to me.

The past decade took me to lows and highs that no one could ever tell me I would personally endure. 95% due to my diagnoses and living with kidney disease. My faith was challenge and I saw how God moved in my life. I have been given second chances which has fueled part of ‘My Purpose” in life.

One of my goals is to elevate my advocacy work higher. Helping others who have a hard time to speak for themselves. Bringing awareness and education to kidney disease and organ donation helps fulfill my life purpose which is to give forward for what was given to me.  I was given a second chance because without asking two young ladies, my daughter and her friend & college sorority sister helped me and as a result I received a kidney.

Thank you to the National Kidney Foundation of Indiana who in their just released February 2020 newsletter featured me in an article about “Why I advocate”. The article is below and I ask that you please click the link to the entire Newsletter is below. Hope you enjoy it.  

Please share a brief  comment about your  "Moving Forward" in 2020. 
Peace, Love, Joy and Happiness to you. CW 
#MyKidneyWatch
#MyKidneysMylife

https://mailchi.mp/kidneyindiana/january2020-2526101?e=40b375ad5

Issue No. 17 /February 2020 The Importance of Advocacy Work Curtis Warfield's story - in his own words How did you get involved in kidney advocacy? When I received a diagnosis of this disease, I felt alone. I really didn’t know anything about CKD, except negative thinking such as you go on dialysis, then you die—unless the dice roll in your favor, you “luck-up”, and get a transplant. My first meeting with [other] people with CKD was very negative. Everyone in that room was angry. So, I wanted to help people by mentoring and through education. I’m also interested in legislative activities that can improve the quality of life for kidney patients through new laws that will enable more research, ease financial burdens and [provide] better care. Secondly, I am so thankful [to] not just one, but two people, young adults [who] were willing to step up and give me a second chance at life. If my donor can give me a kidney that I can’t repay her for, I can give forward to help others. Why do you think kidney advocacy is important? The importance of advocacy work helps bring more awareness to kidney disease to 1) prevent the disease in those who have a chance not to develop it; 2) educate—bring a battle mentality to those who don’t see any hope; 3) increase awareness of organ donation, especially living donation, to the general public; 4) celebrate those living donor heroes as much as those who have given posthumously and 5) help break down myths about CKD, especially in the African-American community and other communities of color. I would like to bring kidney health and awareness more to the forefront and not have CKD treated as a secondary disease. [Instead of just saying] if you have high blood pressures or diabetes then you can get kidney disease, our kidneys should be viewed/valued as important as any other organ. What current kidney advocacy are you working on now? Presently I am advocating for legislation for: Living Donor Protection Act - Senate Bill S.511/House Bill H.R12224 which protects discrimination against a living donor. Recently Indiana State Legislation introduced a similar state bill – Senate Bill 284.  Immunosuppressive Drug Coverage Act – U.S. H.R. 5534 which will lift the three-year limit on Medicare coverage of anti-rejection drugs for people who have kidney transplants. CKD Improvement in Research and Treatment Act (S.1676/H.R. 3912) which will increase awareness of kidney disease, expand preventative services and increase nephrologists care in underserved areas. A different advocacy approach, for me, will be launching a blog page soon called “My Kidney Watch”. It features personal stories from me on living with CKD and special guests on subject matters to encourage, motivate and be relative to patients, caregivers, donors and families covering multiple areas that kidney patients and other chronic diseases patients have to address in their “normal lifestyle”. Curtis Warfield is a Senior Quality Analyst who received a living kidney donation from his daughter’s sorority sister in 2016. Curtis is very passionate in advocating and educating about CKD, dialysis, organ donation and living donors. He is a volunteer for the local Indiana affiliate of the National Kidney Foundation as well as an advocate for the National Kidney Foundation in New York and DC. Curtis has been married for 34 years and has 4 adult children and one grandson. Pictured from left: James Myers (NKFI Volunteer), Rep. Pete Visclosky (D-Dist 1), Curtis Warfield (Kidney Advocate and NKFI Volunteer) Copyright © 2020 National Kidney Foundation of Indiana, All rights reserved. Our mailing address is: 911 East 86th Street, Suite 100 Indianapolis, IN 46240 Contact Us: Indianapolis 317-722-5640 Fort Wayne 260-456-0654 nkfi@kidneyindiana.org Want to change how you receive these emails? You can update your preferences or unsubscribe from this list.

Welcome

Welcome to "My Kidney Watch". Starting in 2020 this blog is feature stories from me and special guests on subjects about:  patients, caregiver, donors and families; health, legislative and organizational areas; studies, new technologies, medical informational stories about living with kidney disease and other chronic diseases. Our objective is to help motivate those of us who are 'just surviving' with kidney disease to move to 'living' with kidney disease, those who are living with KD to becoming active and those who are active to moving to advocacy, mentoring and beyond. 

Looking forward to seeing friends and making new ones and inspiring others to living their best life possible. Living with KD isn't easy but prayerfully this blog can be another piece of the puzzle in a positive direction.

See you in 2020