NephCure on Capitol Hill for 2014 Kidney Community Advocacy Day August 8, 2014 by Lauren Eva May 12, 2014 On May 1, 2014 more than 100 advocates met with 133 congressional offices, including with 19 Senators and Representatives to raise the profile of kidney disease and make the case for investing in kidney research. Another goal was to garner additional co-sponsors for the Immunosuppressive Drug Coverage Act, which will extend coverage of immunosuppressive drugs for Medicare patients who receive a kidney transplant. L-R NephCure Advocate Pam Duquette; NephCure CEO Henry Brehm; NephCure Advocate and FSGS Patient Melanie Stewart; Former NFL Player, Kidney Transplant Recipient and Friend of NephCure Donald Jones Organized by the American Society of Nephrology (ASN), the advocacy day drew constituents from fourteen organizations, including NephCure Kidney International, lent support to the effort, joining forces to champion the cause of kidney disease research and treatment, which we hope will lead to a cure. NephCure was also honored to have one of our own, Melanie Stewart, present to nearly 100 people at a congressional briefing on kidney research and innovation. The briefing, titled “Innovations in Kidney Disease Research: New Hope for Patients,” was co-chaired by U.S. Representatives Tom Marino (R-PA) and Jim McDermott (D-WA), both of whom spoke about their strong support for the kidney community and for research funding to develop cures. “It’s a privilege to tell my story and raise awareness of FSGS, and possible transplant challenges for kidney disease patients,” Stewart said. About The NephCure Foundation NephCure Kidney International is the only organization solely committed to seeking a cause and cure for Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, NephCure aims to help science unlock the biological mechanisms that cause these serious conditions and ultimately find a way to cure and prevent them. Additional Information About The Legislative Agenda Funding Innovation, Improving LivesResearch and innovation are critical to advancing new therapies for the more than 20 million Americans with kidney disease. Kidney Community Advocacy Day participants will campaign for an additional $150 million per year for 10 years in additional kidney research funding to spur innovation. This funding is needed to help develop new therapies that enhance patients’ lives and ultimately cure this public health burden. Immunosuppressive Coverage—A Common Sense ChoiceKidney transplant recipients must take immunosuppressive drugs to maintain the health of their transplants. Currently, Medicare only covers the cost of these drugs for 36 months. Those who cannot afford to pay for the immunosuppressive drugs (approximately $4,000 per year) end up back on dialysis (the government spends approximately $90,000 a year for care for patients on dialysis). L-R NephCure Advocate Pam Duquette gives the patient and family perspective as the parent of an FSGS patient, presenting with Nephrologist Sarah Faubel, MD to Congressman Mark Udall’s office Extending Medicare coverage for immunosuppressive drugs over a recipient’s lifetime is the common sense solution, improving quality of life for people with kidney disease and saving taxpayer dollars.Leaders who participated in Kidney Community Advocacy Day know what’s at stake: More than 20 million Americans have kidney disease, the 8th leading cause of death in the United States. 200,000 of these Americans are children and adolescents, 15,000 of whom are reliant on dialysis or a kidney transplant to remain alive. More than 600,000 Americans have kidney failure, known as end-stage renal disease (ESRD). More than 185,000 Americans live with a kidney transplant and more than 100,000 more are on the wait list. Nearly all patients with kidney failure are Medicare beneficiaries regardless of age, income, or disability. ESRD patients account for nearly 7% of Medicare costs but less than 1% of Medicare patients— a total of nearly $35 billion annually. Nearly 28% of Medicare expenditures involve patients diagnosed with kidney disease.