For the third consecutive year, the ASN Public Policy Board and Board of Advisors partnered with patient advocates from the American Association of Kidney Patients (AAKP) in Washington, DC, in April for Kidney Health Advocacy Day 2015. ASN and AAKP met with nearly 70 congressional offices to raise awareness about kidney disease and urge support for legislative measures that would improve care for patients with kidney disease.
Participants met with members of Congress from their home states, as well as members on the House Energy and Commerce Committee, which has jurisdiction over the 21st Century Cures initiative. The goal of 21st Century Cures is to spur medical research and innovation. Participants advocated in support of three provisions in the bill related to patient-focused drug development, expansion of telehealth, and research funding for young investigators.
Participants also advocated in support for the Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R.1130/S.598). The bill includes provisions that call for three federal reports to address key needs for patients with kidney disease. The reports would assess the adequacy of federal investments in kidney research compared to the cost of kidney care, outline legislative and regulatory steps to reduce kidney health disparities, and identify disincentives in the Medicare payment systems that create barriers to kidney transplantation and posttransplant care for beneficiaries with kidney failure.
Three Kidney Health Advocacy Day 2015 participants offered reflections on their experience.
My first time as a Kidney Health Advocacy Day participant was simply terrific. The day began with ASN staff members prepping all of us on the legislation we would be discussing, and preparing us for potential “traps” that we might find ourselves in when speaking with legislative staffers.
These pearls of wisdom stuck with me throughout the day, reminding me to stay on message. We had a terrific team for the day—nicknamed ‘Huskie-Terrapins’ which garnered some interest on Twitter. Our group included Nancy Day Adams, MD (Chair of the ASN Training Program Directors Executive Committee, veteran advocate, and nephrology faculty at University of Connecticut) and Richard Knight (Vice President of AAKP and a Maryland native).
We took turns presenting key points during the day, based upon our complementary expertise. Our presentations were quite seamless, thanks to our preparation over breakfast that morning. We met with five different congressional offices: Sen. Richard Blumenthal (D-CT), Rep. Elijah Cummings (D-MD), Rep. Donna Edwards (D-MD), Rep. John Larson (D-CT), and Sen. Barbara Mikulski (D-MD). A special treat was when Rep. Edwards emerged from her office to share with us her personal connection to kidney disease. It was a fun day of advocacy.
Kidney Health Advocacy Day 2015 was by far the best congressional advocacy day I have attended. The day started as ASN staffers prepared everyone during breakfast for what we were lobbying for that day. I appreciated this so I would better understand what I was to speak about.
Additionally, I think my team was very well balanced this year. My team consisted of two doctors, one a younger, newer doctor (Kevin F. Erickson, MD, an ASN Public Policy Board intern) and the other an older experienced doctor (Raymond M. Hakim, MD, PhD, a member of the AAKP Board of Directors and ASN Public Policy Board). I was the third team member and the patient advocate, with 27 years of experience as a patient.
In every meeting we had, I felt as if the three of us played off of each other discussing the information we wanted to present. My group met with four different congressional offices, three of which were from my home state of Oklahoma: Sen. Dianne Feinstein (D-CA), Sen. Jim Inhofe (R-OK), Sen. James Lankford (R-OK), Rep. Steve Russell (R-OK).
Thanks to how well my team worked together, I felt we successfully illustrated all we intended. Everyone we spoke with indicated they would support the legislation we presented that day. When we were done for the day, I felt like it had been a big rush! This experience was one of the best I have ever had on Capitol Hill.
This year was my first time participating in Kidney Health Advocacy Day. We started with a morning briefing during which we discussed the importance of both the 21st Century Cures initiative and the CKD Improvement in Research and Treatment Act. Then we broke into teams for congressional office meetings to raise awareness about the legislation and how it would benefit patients with kidney disease.
I was joined by ASN Public Policy Board member Uptal D. Patel, MD, an adult and pediatric nephrologist, and AAKP advocate Edward Scott, a patient with Polycystic Kidney Disease. We met with a total of six congressional offices: Sen. Richard Burr (R-NC), Rep. G.K. Butterfield (D-NC), Sen. Kirsten Gillibrand (D-NY), Rep. Steve Israel (D-NY), Sen. Chuck Schumer (D-NY), and Rep. Lee Zeldin (R-NY).
I was surprised by the genuine interest in kidney disease by each of the offices. All of them recognized the value of investing in kidney research for reducing the significant societal burden of kidney disease. After the excitement of the day died down, I was left with a feeling that our efforts were not in vain and that there is real hope for big change.