ASN and Patient Advocates Advance Kidney Health on Capitol Hill

On April 25, 2013, the American Society of Nephrology (ASN) met with nearly 60 congressional offices for Kidney Health Advocacy Day. In a first for ASN, the society partnered with the American Association of Kidney Patients (AAKP) and Dialysis Patient Citizens (DPC) to build support for the following three key issues of mutual importance to the three organizations.

Passage of transplant legislation that will ease access to organ donations and provide kidney transplant recipients lifetime coverage of immunosuppressive drugs:

The HIV Organ Policy Equity Act, or HOPE Act, passed by unanimous consent in the Senate on June 17 after vigorous advocacy by ASN and more than 50 other organizations (see story, next page). The bill, which must still pass the House before President Barack Obama can sign it into law, would end a 1984 federal ban on the transplantation of organs from deceased HIV+ people to people with HIV who are on the transplant list. Because lifting this ban would free up organs of all types, patients with HIV would get organs faster than they would on the waitlist, and that would make more organs available for all patients.

The “Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2013” (S. 323 / H.R. 1438) would extend Medicare coverage for immunosuppressive drugs over a recipient’s lifetime, protecting Medicare’s investment in the transplant and ensuring that no patients will lose their kidney.

Sustained funding for medical research

Sequestration cut National Institutes of Health (NIH) funding in 2013 by 5.1 percent, or $1.6 billion, affecting all NIH institutes and centers, including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). That means that approximately 700 fewer competitive research project grants will be issued this year than in 2012. These cuts are on top of NIH’s already shrinking purchasing power. AAKP, ASN, and DPC urged Congress to protect NIH from more budget cuts that are planned between 2014 and 2021. The three organizations also urged Congress to increase funding for the medical research and infrastructure budgets of the U.S. Department of Veterans Affairs, which, while exempt from sequestration, have not kept up with the pace of inflation.

ASN’s new partnership with the U.S. Food and Drug Administration (FDA): the Kidney Health Initiative (KHI)

Formed in September 2012, KHI allows ASN and the FDA to bring together stakeholders, including industry, academia, and patients, to foster the development of new therapies for diseases that affect the kidney (see story, page 5). Numerous barriers prevent or discourage companies from investing in this space. KHI, which covers every FDA division (drugs, devices, biologics, and food safety), will help innovators or companies bring ideas from concept to cure.

“Pairing kidney health professionals with patient advocates was a successful model that ASN hopes to replicate in future years,” said ASN public policy board chair Thomas H. Hostetter, MD. “The society is grateful to AAKP and DPC for their participation in Kidney Research Advocacy Day, and hopeful that Congress will take positive steps to enact long overdue transplant legislation and protect medical research funding. Members of the Kidney Health Initiative have already hit the ground running on several projects, and we look forward to keeping Congress informed of their progress.”

Nearly 40 AAKP, ASN, and DPC leaders, patient advocates, and staff participated in Kidney Health Advocacy Day 2013.


(left to right) ASN Past President Ronald Falk, MD, FASN, KHI Project Director Melissa West, JST’s Andrew Shore, KHI Co-Chair Prabir Roy-Chaudhury, MD, PhD, FASN, and AAKP President and KHI Board of Directors Member Sam Pederson meeting on KHI.


Senator Susan Collins (R-ME) with ASN Workforce Committee Chair Mark Parker, MD, (left) and ASN Policy Assistant Mark Lukaszewski (right) discuss kidney disease and the importance of sustained research funding.


(right to left) ASN Chronic Kidney Disease Advisory Group Chair Uptal Patel, MD, ASN Physiology and Cell and Molecular Biology Advisory Group Chair Jeffrey Miner, PhD, DPC Patient Ambassador Diane Brisbane, Senator Roy Blunt (R-MO), DPC Patient Ambassador William Shireman and DPC Policy Assistant Stephen Campbell after meeting to discuss the immunosuppressives bill and HOPE Act.


(right to left) ASN President Bruce Molitoris, MD, FASN, and AAKP Vice President Paul Conway explain the value of NIH and NIDDK funding with Peter Gwynn-Sackson, Legislative Assistant for Senator Mary Landrieu (D-LA).


(left to right) JST’s Jim Jochum, KHI Project Director Melissa West, ASN Councilor Mark Okusa, MD, FASN, ASN Public Policy Board Member Wolfgang Winkelmayer, MD, ScD, FASN.


July 2013 (Vol. 5, Number 7)