ASN and AAKP Band Together for Kidney Health Advocacy Day 2015

Grant Olan
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On April 23, the ASN Public Policy Board and Board of Advisors joined patient advocates from the American Association of Kidney Patients (AAKP) for Kidney Health Advocacy Day 2015. Participants divided into teams of three or four and met with nearly 70 congressional offices to discuss two legislative priorities that would improve kidney care and patient health: 21st Century Cures and the Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R.1130/S.598).

This marks the third consecutive year ASN and AAKP have partnered together for advocacy days. “When the world’s largest professional kidney organization partners with America’s oldest and largest kidney patient organization, Congress listens,” AAKP President Paul T. Conway remarked. “ASN and AAKP appreciate the access congressional leaders and their staffs allow us as we promote legislation aimed at addressing gaps in chronic kidney disease research funding and barriers to kidney transplantation.”

Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R.1130/S.598)

Introduced in the House of Representatives by Rep. Tom Marino (R-PA)—a three-time kidney cancer survivor and co-chair of the Congressional Kidney Caucus—and Rep. John Lewis (D-GA), and in the Senate by U.S. Senators Ben Cardin (D-MD) and Mike Crapo (R-ID), ASN and AAKP highlighted the three sections of the Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R.1130/S.598) calling for federal reports that would address key needs for patients with kidney disease.

1. Section 101: Identifying Gaps in Kidney Research

If passed by Congress, H.R.1130/S.598 would expedite a report Rep. Marino requested from the U.S. Government Accountability Office (GAO) in 2014 on the adequacy of federal investments in kidney research compared to federal expenditures for kidney care. This bill requires a report within one year after enactment.

An ASN analysis showed that the federal government invests less than 1% of what it spends on kidney care in kidney research. An analysis from an independent and respected body, such as the GAO, would provide validation and identify gaps in kidney research where additional investments could spur innovation and new therapies for improving patient care.

2. Section 103: Understanding the Progression of Kidney Disease and Treatment of Kidney Failure in Minority Populations

H.R.1130/S.598 would also require the Secretary of the U.S. Department of Health and Human Services (HHS) to submit a report to Congress—also within one year after enactment—on the social, behavioral, and biological factors leading to kidney disease; national efforts to slow the progression of kidney disease in minority populations disproportionately affected by such disease; and treatment patterns associated with providing care to minority populations disproportionately affected by kidney failure.

Why are African Americans more than three times as likely as Caucasians to develop kidney failure and up to 10 times as likely to develop kidney failure due to hypertension? Why are Hispanics and Native Americans nearly twice as likely as Caucasians to develop kidney failure? A HHS report would illuminate the legislative and regulatory steps needed to better understand and reduce disparities.

3. Section 104: Identifying Barriers or Payment Disincentives for Transplant and Posttransplant Care

The statistics are startling: in impoverished neighborhoods African Americans are 57% less likely to be waitlisted for a kidney transplant than their Caucasian counterparts and African Americans, Hispanics, and Native Americans wait approximately twice as long as Caucasians (commonly more than four years) to receive a kidney transplant.

H.R.1130/S.598 would require the Secretary of HHS—no later than two years after enactment—to submit a report to Congress on any disincentives in the Medicare payment systems that create barriers to kidney transplantation and posttransplant care for beneficiaries with kidney failure.

21st Century Cures

Launched in 2014 by House Commerce and Energy Committee (E&C) Representative Fred Upton (D-CO) and E&C Subcommittee on Oversight and Investigations Ranking Member Diana DeGette (D-CO), the goal of 21st Century Cures is to spur medical research and innovation. After nearly a year of hearings, the committee organized to gather feedback from the public and regulators. A draft bill was released earlier this year that includes three provisions ASN and AAKP advocated for that would benefit patients with kidney disease. The committee is in the process of drafting language for each of the provisions.

1. Patient-Focused Drug Development

This provision would help facilitate the inclusion of patient preferences in the regulatory process, which is an important goal that has been recognized by patients, the U.S. Food and Drug Administration, and other stakeholders. No one understands a particular condition or disease better than patients living with it. Meaningfully incorporating patient experience data into decision-making, such as patient assessments of desired benefits and tolerable risks associated with new treatments, is an important objective for increasing available therapies.

2. Expansion of Telehealth

Patients at every stage of kidney disease—from those with early-stage chronic kidney disease who may be at risk to progressing, to those who are on dialysis, to those who have received a kidney transplant or donated a kidney—would benefit from the expansion of telehealth opportunities that this provision seeks to facilitate. However, rigorous testing to evaluate whether telehealth services achieve their intended goals is imperative.

3. Supporting Young NIH Investigators

One of the biggest challenges to developing new cures is that young scientists have a hard time getting their research funded by the National Institutes of Health (NIH). That is especially troubling now that NIH’s funding rate is at historic lows with only 1 in 6 grant applications funded. This provision would allow NIH to keep funding shifted from the agency’s budget to benefit other HHS programs—which added up to $700 million in 2013—and reserve it for researchers applying for their first or second grant.

“ASN is pleased to again partner with AAKP to amplify the voices of patients with kidney disease, one of the most vulnerable patient populations,” said ASN President Jonathan Himmelfarb, MD, FASN. “We urge Congress to pass the Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R.1130/S.598) and to support the 21st Century Cures initiative, which would advance research, improve treatment, and save lives.”

Join ASN and AAKP in promoting H.R.1130 and S.598 by visiting ASN’s Legislative Action Center at and sending your members of Congress a pre-composed message telling them how important this bill is for patients with kidney disease.