The American Association of Kidney Patients (AAKP) joined forces with the Renal Physicians Association (RPA) to raise awareness about kidney disease while in Washington, DC on Friday June 12, 2015. Members of AAKP and RPA met with members of the U.S. House of Representative, U.S. Senate and their staff.  AAKP is the largest patient founded and operated kidney disease organization in the U.S. AAKP is a patient education and advocacy organization dedicated to improving the quality of life for kidney patients and their family.  The RPA is a nephrology specialty medical association dedicated to representing and serving nephrology practitioners in their pursuit and delivery of quality kidney health care.

AAKP patient volunteers and RPA physician members met with Congressional members and their staff some of which included Rep. Chris Van Hollen (D-MD-8), Rep. Donna Edwards (D-MD-4), Sen. Barbara Milkulsik (D-MD), Bill Posey (R-FL-8), Rep. David Jolly (R-FL-13), and Sen. Marco Rubio (R-FL).

“This was a unique opportunity for Congressional members and their staff to hear from both patients and the physicians who care for them about issues that have a direct impact on patient lives,” stated AAKP Vice President and kidney transplant Richard Knight.  “One of the primary goals of our organization is to advance potential treatments so that all people with kidney disease have an opportunity to live longer and fuller lives.  Teaming up with an organization like RPA helps both organizations advance our mutual goal of providing a better life for kidney patients.”

Patients from AAKP and physicians with RPA met with Congressional staff members on key issues affecting those living with kidney disease:

• The Chronic Kidney Disease Improvement in Research and Treatment Act which addresses gaps in critical research by requiring the Department of Health and Human Services to evaluate federal spending on kidney disease research compared to that on kidney disease treatment; improve coordination of Federal research efforts across agencies; and investigate the differences in disease progression and treatment patterns in minority populations which are disproportionately impacted by the disease. The bill also improves access to care for Medicare beneficiaries with CKD. It removes barriers to patients receiving the Medicare Kidney Disease Education program, which helps patients make informed decisions about dialysis options, including home dialysis, getting on the transplant waiting list, and steps to take towards identifying a living kidney donor. The bill also provides incentives to nephrologists and other non-physician health professionals to practice in underserved rural and urban areas to improve access to care.
• Medicare coverage of immunosuppressive drugs for the life of a transplanted kidney – Currently many kidney transplant recipients lose their Medicare coverage 36 months after receiving a transplant.  In some cases, these individuals are then unable to afford the cost of anti-rejection medications. AAKP and RPA believe Medicare coverage of immunosuppressive drugs for the life of the kidney will protect the long term interest of the American taxpayers through greater cost savings while simultaneously improving health outcomes kidney transplant recipients and lowering the incidents of organ rejections.

 

• Medicare Coverage for Dialysis Services Provided to Non-ESRD Patients in Outpatient Dialysis Facilities – In July 2012, the Centers for Medicare and Medicaid Services issued guidance stating that ESRD facilities cannot provide acute dialysis to hospital outpatients. This means a hospital may not enter into an arrangement with an ESRD facility for the ESRD facility to provide, outside of the hospital, outpatient dialysis or any other therapeutic service for which the hospital would bill Medicare.  While acute kidney injury (AKI) patients may be dialyzed in the outpatient department of a hospital, this option is: (1) more expensive to the Medicare program than dialysis facility reimbursement; (2) reliant upon the hospital being able to provide dialysis services to the acute patient in the outpatient department; and (3) in many cases substantially burdensome to the patient, in that she or he may be required to travel great distances to receive life-saving therapy.  AAKP and RPA support legislation authorizing Medicare coverage for dialysis for AKI, non-ESRD Medicare beneficiaries in outpatient dialysis facilities.

 

• And AAKP and RPA encourages Congress to increase its oversight of CMS’ quality initiatives affecting Medicare providers to facilitate patient safety and reduce regulatory burdens.

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 109,000 people on the kidney transplant waiting list.

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 health care and policy experts 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. For more information on the 2015 AAKP National Patient Meeting, as well as sponsorship and vendor opportunities, please contact Diana Clynes, AAKP’s Director of Programs & Services at dclynes@aakp.org or call 813-400-2391.

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.