An Overview of the Kidney Patient Summit in Washington D.C.

By Bruce Tippets, AAKP Ambassador


American Association of Kidney Patients’ Ambassadors (AAKP) made a huge impact by telling their personal stories and discussing key legislative issues with respective lawmakers and staffers during the 6th annual Kidney Patient Summit in Washington D.C. on March 4 & 5, 2019.

The two-day event, hosted by the National Kidney Foundation (NKF) included patient advocates from the American Association of Kidney Patients (AAKP); the Alport Syndrome Foundation (ASF) and the Polycystic Kidney Disease Foundation (PKDF).

“I would call the summit a success,” said AAKP President Richard Knight. “It was well organized, and we had a good message to share with our representatives. Out of all the participants, 31 of them were AAKP Board Members and/or Ambassadors. It really highlighted the commitment AAKP Ambassadors have in making a difference and getting engaged at the Federal level.”

Besides Knight and Paul Conway, AAKP Past President and Chair of Policy/Global, the other official advocates representing AAKP were Diana Clynes (AAKP Executive Director), Victoria Schmalstig (AAKP Ambassador, Ohio), Edward Drake II (AAKP Ambassador, Georgia) and Bruce Tippets (AAKP Ambassador, Utah).

“The overall representation of the AAKP Ambassador program underscores its immense value,” Knight said. “The fact that there are kidney patients who belong to a number of organizations is just a tribute to how committed the patients are to not being victims but having impact on their on their own fate.”

Schmalstig had a heck of a plane trip just getting to Washington D.C. from Columbus, Ohio, due to canceled flights, delayed flights and missed connections. The trip ended up taking 22 hours.

“I was excited, nervous and exhausted,” she said. “To say the summit was so much more than expected would be an understatement. The people, the stories and the cause made the trip one to remember. I definitely have the advocacy bug and to continue my work advocating for kidney patients and living donors.”

This was the second straight year Tippets represented AAKP at the summit. Tippets is also a member of the NKF’s Advocacy Committee. He received his kidney transplant on Oct. 18, 2018 from the University of Utah hospital after being on dialysis for four and a half years. Tippets was the only advocate from Utah this year in D.C.

“It was an honor to represent AAKP at the summit and share my personal story with my respective lawmakers,” Tippets said. “I feel so blessed to have received a kidney, I just want people to know how important these kidney issues are. It means the world to me. I really enjoy meeting kidney advocates from all over the United States and hear their different stories.”

The first day of the summit was used for training. The advocates were able to hear from the U.S. Department of Health and Human Services Secretary Alex M. Azar, II.

His speech was made at the Holiday Inn Washington Capitol where Secretary Azar covered a number of topics, including earlier identification of kidney disease, increased transplantations and pre-emptive transplantations, a change toward increasing home dialysis use, a pay model that supports patient choice and improved patient outcomes, more cost-effective ways to deliver dialysis to people in times of emergencies or natural disasters, and more.

Another point Azar stressed in his speech was the National Living Donor Assistance Program, which compensates living donors for travel and other expenses related to donation.

“No. 1, he is a strong advocate of home dialysis,” Knight said. “No. 2, he is very much in favor of increasing the number of transplants and that is a big thing. I think it’s very important for people to understand we go to Capitol Hill so that legislation can be passed, but Secretary Azar is in the process of implementing the agenda which is very much in sync with what AAKP supports. We appreciate that he understands where the patients are because his father spent time on dialysis.”

During the second day of the summit, the advocates had an opportunity to visit and encourage lawmakers to support the Living Donor Protection Act of 2019.

“It was amazing meeting Senator Portman in person,” Schmalstig said. “Also, having him check his license to make sure he was a donor and choosing to share my and Edward's story with the whole group at the coffee house was extremely special to me.”

The LDPA was recently introduced by Senators Kirsten Gillibrand (D-NY) and Tom Cotton (R-AR) and Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA). AAKP encourages Congress to pass this bipartisan bill as it reflects the opinion letter issued by the U.S. Department of Labor under Secretary Alexander Acosta which states that the Family Medical Leave Act (FMLA) coverage extends to living donors. Under the LDPA, insurance companies are prohibited from denying or limiting life, disability, and long-term care insurance to living donors, and from charging higher premiums. This will protect living organ donors and help remove barriers to living organ donation.

The advocates also talked about how the participating organizations want to introduce legislation of extending Medicare coverage for anti-rejection pills.

Medicare covers the pills for only 36 months post-transplant, leaving many recipients struggling to find affordable coverage once that time is up.

“The meetings were all very productive and we also had the opportunity to meet a couple of new legislative staffers,” Knight added. “It was important to introduce yourself to them and make yourself known to the team because it's the staffers that will be relaying the message to the congressman/woman or the senator.”

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