U.S. Congress Asked to Fund Research and Remove Barriers to Organ Donation
Washington, DC – On Thursday, September 10, 2015, the American Association of Kidney Patients (AAKP) joined the largest coalition of national kidney-related organizations ever aligned on Capitol Hill to request more kidney research funding and to remove policy barriers to increased living donor kidney donations.
The American Society of Nephrology (ASN) assembled the coalition of 16 major national kidney organizations for the 2015 Kidney Community Advocacy Day in Washington, DC. The kidney coalition conducted an unprecedented 110 plus meetings in one day with Congressional leaders and staff across the U.S. Senate and the U.S. House of Representatives.
Advocates encouraged their elected officials and staff to advance legislation designed to:
- Increase funding for kidney disease research – Historically, kidney research has been underfunded compared to other diseases and compared to the public health burden and cost to taxpayers. The lack of innovation is reflected in the cost of the Medicare End Stage Renal Disease Program (ESRD) which accounts for nearly 7% of Medicare costs to the American taxpayer (a total of nearly $35 billion annually) but covers less than 1% of Medicare patients. Kidney care advocates are seeking to have Congress to approve a budget deal that ensures recommended investments in kidney research so that new medical advancements and discoveries can improve health outcomes for patients and lower long-term costs of the disease.
- Support the Living Donor Protection Act – The bill would increase the number of transplants by eliminating obvious and unnecessary barriers to donation by 1.) prohibiting insurance companies from denying or limiting coverage and from charging higher premiums to living organ donors for life, disability, and long term care plans; 2.) clarify that living organ donors can use “time off” protected by the Family and Medical Leave Act to recover from donation surgery and maintain job security; 3.) direct the Secretary of Health and Human Services to create educational materials about living donation, and task her with encouraging more Americans to consider living donation.
“ASN, the world’s largest kidney health professional organization representing nearly 16,000 members, was honored to partner with 15 kidney patient and health professional groups to present a united voice to Congress. Together, we made the case that investing in kidney research is not only important to bring hope to the millions of Americans affected by kidney disease, but also a smart investment for the federal government given the significant cost of kidney care to the Medicare system,” said ASN President Jonathan Himmelfarb, MD, FASN. “Our organizations also rallied around legislation that aims to eliminate barriers to living donation, helping more patients get access to transplantation, which for most is the optimal therapy.”
“As a kidney transplant recipient and the president of the largest patient run kidney organization in America, I know full well the impact this disease has on individuals, their families and the American taxpayer. The true cost of kidney disease extends far beyond the metric of dollars – it includes delayed dreams, devastating sickness, lost productivity and the inherent risks associated with dialysis treatment,” stated AAKP President Paul T. Conway. “Through the efforts of the American Society of Nephrology, the U.S. Congress heard a united voice from 16 organizations that represent millions of Americans who combat this disease every day. We respectfully asked for legislation to increase research funding and to remove barriers to living organ donation – we are united in our effort to develop better treatments and to reduce organ transplant waiting lists.”
Kidney care, including dialysis, costs the American taxpayer over $35 billion per year, an estimated 7% of the Federal budget. An estimated 26 million Americans suffer from chronic kidney disease (CKD), including more than 600,000 individuals who suffer from complete renal failure which includes those on dialysis or have a functioning kidney transplant. Today, there are more than 100,000 people on the kidney transplant waiting list.
AAKP patient volunteers, including transplant and dialysis patients, conducted visits across Capitol Hill with multiple Congressional offices, some of which included: Senator Bill Nelson (FL); Senator Marco Rubio (FL); Senator Chuck Grassley (IA); Senator Joni Ernst (IA); Senator Gary S. Peters, (MI); Senator Debbie Stabenow (MI); Senator Mark Warner (VA); Representative Thomas Rooney (FL); Representative Patrick Murphy (FL); Representative Lois Frankel (FL); Representative Bob Goodlatte (VA), Representative John Sarbanes, (MD); Representative Don Beyer (VA) and Representative Debbie Dingell (MI).
AAKP will continue its focus on patient health, patient engagement and public policy at its 2015 National Patient Meeting to be held in Nashville, Tennessee September 25-27, 2015. The National Patient Meeting will feature healthcare and policy experts from the American Society of Nephrology, the federal Food and Drug Administration, the Renal Physicians Association, the End Stage Renal Disease National Coordinating Council, and Stanford University discussing topics including expansion of living kidney donation, new treatment methods, advances in medical technology and pharmaceuticals, efforts to keep kidney patients fully employed as well as training on social media activism. To learn more about the AAKP National Patient Meeting visit www.aakp.org.
2015 Kidney Community Advocacy Day Participating Organizations
AAKP is a voluntary non-profit organization founded by kidney patients, which for more than 45 years, has been dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.