ASN and AAKP: Forging Relationships on Capitol Hill

ASN President Raymond C. Harris MD, FASN, (left) and Raymond M. Hakim MD, PhD, (right) meet with congressional Representative Jim Cooper (D-TN, center) in his office on Capitol Hill to discuss the Living Donor Protection Act (S. 2584/H.R. 4616).

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For the fourth 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, to host Kidney Health Advocacy Day 2016 in April. The goal of Kidney Health Advocacy Day 2016 was to bring kidney patients and kidney doctors together to meet with members of Congress and congressional staff to advocate for support and passage of the Living Donor Protection Act (LDPA – S. 2584/H.R. 4616). In addition, those patients and doctors used the opportunity to also raise awareness of the scope of kidney disease in America along with its impact on American lives and our health care system.

There were a total of 50 participants from both ASN and AAKP. On Capitol Hill, they attended 78 meetings with members of Congress—both Senate and House—and their staff. In the first week following the meetings, 11 new cosponsors were added to the LDPA in the House of Representatives and follow-up is ongoing.

Participants complimented current sponsors and cosponsors of LDPA for advancing sound policy to promote living organ donation and setting an excellent example of thoughtful legislation crafted for the good of all.

Three Kidney Health Advocacy Day 2016 participants offered reflections on their experiences.

Vanessa Grubbs, MD, MPH

University of California, San Francisco Nephrology

San Francisco General Hospital Renal Center

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I imagine most nephrologists have heard the story of how the combination of compelling data about young lives cut short by kidney failure and the presence of an actual dialysis patient before Congress undergoing just minutes of the treatment that could save those lives led to Medicare’s End-Stage Renal Disease (ESRD) Program. The ESRD program is the first and only disease-specific Medicare program.

Similarly, my first time participating in Kidney Health Advocacy Day taught me how important data and patient stories are to making policy happen to this very day. Armed with a streamlined training over breakfast and a few pages of easy-to-digest data to leave behind about why the Living Donor Protection Act needed to be passed, my team and I were able to educate seven young staffers representing senators and congressmen from California and Oregon, one-by-one.

However, it was my personal story of becoming a kidney donor that seemed to really get their attention. We finished the day feeling confident that our combination of data and story were enough to persuade those staffers to convince their bosses to support our mission!

Eugene Lin, MD

Stanford University, Nephrology Fellow

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Having never participated in congressional advocacy before, I was definitely nervous about Kidney Health Advocacy Day. Excitement quickly eclipsed my anxiety, though, as we kicked off the day with a training session, which was expertly run by ASN and AAKP staff. Afterward, our team (big shout out to Drs. Nuria Pastor-Soler, Vanessa Grubbs, and Suzanne Watnick, from Team West Coast) eagerly set out for our first meetings on Capitol Hill.

Although we had a full day of seven meetings with congressional staffers, everything went by quickly. Our meetings spanned close to the entire West Coast: Sen. Barbara Boxer (D-CA), Sen. Dianne Feinstein (D-CA), Rep. Anna Eshoo (D-CA), Rep. Nancy Pelosi (D-CA), Rep. Xavier Becerra (D-CA), Sen. Ron Wyden (D-OR), and Rep. Earl Blumenauer (D-OR). Sharing our patients’ stories and experiences lent a powerful, yet personal, perspective to our message.

Advocating for the Living Donor Protection Act was a blast! It was an educational and fun experience for me, and I believe that our efforts helped push forward important protections for future kidney donors. #KidneyAdvocates

Dave White

ASN Kidney Health Initiative Patient and Family Partnership Council Member, AAKP Member, Mid-Atlantic Renal Coalition Medical Review Board Patient Representative and Patient Advisory Committee Chair

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Growth usually lies outside of one’s comfort zone, and I grew by participating in Kidney Health Advocacy Day 2016. My team, “Team Maryland,” consisted of Deidra Crews, MD, FASN, MPH (ASN Chronic Kidney Disease Advisory Group chair and Diversity and Inclusion Group member), AAKP Vice President Richard Knight, and little ol’ me, a recent kidney transplant recipient. We spent the day meeting with members of Maryland’s congressional staff in support of the Living Donor Protection Act (S. 2584 /H.R. 4616). If this legislation becomes law, it will remove barriers to organ donation, save lives, and improve the quality of life for many.

Throughout the day, my team had meetings with congressional staff members for Sen. Ben Cardin (D-MD), Rep. Donna Edwards (D-MD), Rep. John Sarbanes (D-MD), and Rep./Democratic Whip Steny Hoyer (D-MD). All three of us took turns leading the meetings, and I was honored to add my perspective as a patient advocate and transplant recipient. The congressional staff were engaged and supportive of our cause in every meeting.

I look forward to participating in the next Kidney Health Advocacy Day. Representing other kidney disease warriors (and potential organ donors) was a humbling honor and a great way to pay my blessings forward.