Hill Visits

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AAKP on Capitol Hill

In collaboration and in support of our close allies, AAKP members conduct over 120 Congressional office visits each year.

Through advocacy, AAKP aims to empower patients to be impactful in policy regulatory and legislative processes.

Our most recent hill visits are highlighted below.

 

Social Media and Advocacy

Advocacy is more than just writing letters and meeting with your local and State representatives. It is important to spread the word on social media about your advocacy efforts and your story. Please tweet to us @Kidneypatients and use Hashtags such as #HillDay or #MyKidneysMyLife #KidneyDisease #ESRD or #CKD so we can retweet and comment on your efforts!

Our social handles are:

Facebook: https://www.facebook.com/kidneypatient
Twitter: @kidneypatients
Instagram: https://www.instagram.com/kidneypatients/
LinkedIn: https://www.linkedin.com/company/american-association-of-kidney-patients

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

American Association of Kidney Patients

Alport Syndrome Foundation

American Kidney Fund

American Nephrology Nurses Association

American Society of Nephrology

American Society of Pediatric Nephrology

American Society of Transplant Surgeons

American Society of Transplantation

Home Dialyzors United

IGA Nephropathy Foundation of America

National Kidney Foundation

National Renal Administrators Association

NephCure Kidney International

Oxalosis and Hyperoxaluria Foundation

Polycystic Kidney Disease Foundation

Society of Transplant Social Workers

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.

Patient and Physicians Take Kidney Care Matters Message to Capitol Hill

 

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.

Congressional Visits Focus on Kidney Research and Treatment

Kidney Specialists and Patients Team Up for Congressional Action

The American Association of Kidney Patients (AAKP) joined the American Society of Nephrology (ASN) in Capitol Hill for the 3rd Annual Kidney Health Advocacy Day. The physicians and medical researchers of ASN were joined by AAKP patient volunteers from across the country met with multiple elected leaders and over 70 key staff members of the House of Representatives and the U.S. Senate to show support for legislative and policy solutions of critical importance to kidney patients and medical researchers.

ASN President Jonathan Himmelfarb, MD, FASN stated, "ASN values the opportunity to again partner with AAKP to advocate for issues of mutual important to our organizations and to the millions of Americans with kidney disease.  The society looks forward to continuing the tradition of ASN-AAKP collaborative advocacy in the 114th Congress and beyond."

Paul T. Conway, President of the American Association of Kidney Patients said, "When the world's largest professional kidney organization partners with America's oldest independent kidney patient advocacy organization, Congress is very interested in the recommendations we put forward together. ASN and AAKP appreciated the access Congressional leaders and their staffs allowed us as we promoted pro-patient policies, including issues aimed at addressing gaps in chronic kidney disease research funding and barriers to kidney transplantation."

AAKP volunteers and ASN members conducted visits across Capitol Hill with multiple Congressional offices, some of which included: Senator Richard Burr (R-NC), Senator James Lankford (R-OK), Senator Tim Kaine (D-VA), Senator Debbie Stabenow (D-MI), Senator Joe Donnelly (D-IN), Senator Richard Blumenthal (D-CT) , Senator Mark Warner (D-VA), Senator Chuck Schumer (D-NY), Representative Robert Hurt (R-VA), Representative Joe Kennedy (D-MA), Representative Steve Russell (R-OK), Representative Bobby Rush (D-IL), Representative Donna Edwards (D-MD) Representative Culberson (R-TX), Representative Michelle Lujan Grisham (D-NM) and Representative Gerald Connelly (D-VA).

Specifically, AAKP patient volunteers and ASN members discussed key issues with Congressional staffers, some of which appear in current legislation aimed at Chronic Kidney Disease entitled The CKD Improvement in Research and Innovation Act of 2015 (HR1130/S598)

  • A legislative directive to the Secretary of Health and Human Services to produce a comprehensive study to the Congress of any disincentives in the Medicare payment systems that create barriers that prevent people from receiving kidney transplants and post-transplant care for beneficiaries with end stage renal disease..
  • A comprehensive report from the Government Accountability Office (GAO) on the adequacy of Federal investments in chronic kidney disease research relative to chronic kidney disease care. A legislative directive to the Secretary of       Health and Human Services (HHS) to submit a comprehensive report to Congress the social, behavioral and biological factors leading to kidney disease and efforts to slow the progression of the kidney disease in minority populations that are disproportionately affected. The proposed report would also examine the treatment patterns associated with providing care to minority populations that progress more quickly to kidney failure.

Other issues ASN staff and AAKP volunteers discussed included:

  • Interest in integrating patient experience data into the regulatory approval process and using patient preferences to enhance risk-benefit analysis.
  • The expansion of telehealth in the Medicare program and waiving the limitations regarding what type of location qualifies as an “originating site.”
  • Policy changes to help the National Institute of Health (NIH) keep more of its own budget and reserve that funding to support young scientists’ promising grant proposals. This reform would encourage the brightest young scientific minds to remain in the field of medical research.

In addition to Congressional leaders, AAKP works closely with Federal agencies and senior officials responsible for kidney disease health policy and regulatory decisions, including dialysis and kidney transplantation. These agencies include the Centers for Medicare and Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), the Center for Medicare & Medicaid Innovation (CMMI), the Government Accountability Office (GAO), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), as well as the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

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.

U.S. Senate and House Members Listen to Kidney Patients

AAKP Joins National Kidney Foundation on Capitol Hill

TAMPA, FL:The American Association of Kidney Patients, AAKP, kicked off National Kidney Month March 2-3 as a partner with the National Kidney Foundation (NKF) at the second annual Kidney Patient Summit in Washington, D.C.

Over eighty kidney patients and caregivers from across the country met with their elected representatives to voice their strong support for efforts to increase living kidney donations, provide immunosuppressive drug coverage for the life a transplanted kidney (coverage is currently limited to thirty-six months) as well as continued kidney disease research and prevention funding.

Richard Knight, Vice President and Chair of Public Policy for the American Association of Kidney Patients stated, “We sincerely appreciated the amount of time Congressional leaders and their staffs spent listening carefully to patient concerns. Each person with whom we spoke indicated they had learned more about the practical impact kidney disease has on an individual’s ability to remain healthy, fully employed and capable of caring for their families and pursuing their dreams.” Knight continued saying, “We were very encouraged with the level of bipartisan support for more legislative efforts to encourage living donation, provide immunosuppressive drug coverage for kidney transplant patients and to expand research funding.” Mr. Knight is a veteran Capitol Hill staffer, small business owner and an adjunct faculty member of Bowie State University’s College of Business.

In addition to AAKP and NKF, the 2015 Kidney Patient Summit included patient representatives from the Polycystic Kidney Disease Foundation (PKDF), the Alport Syndrome Foundation (ASF), the IGA Nephropathy Foundation of America (IGA), andNephcure Kidney International (NFI).  Over the next several months, AAKP will expand its Capitol Hill efforts as it joins other allies from the health care and the kidney community to make kidney patient perspectives better known among Congressional leaders and their staffs. AAKP will be joining with the American Society of Nephrology(ASN), the Renal Physicians Association (RPA), the National Renal Administrators Association (NRAA) and several other national organizations.

AAKP board members and patient members conducted visits across Capitol Hill with multiple Congressional offices, some of which included: Senator Ben Cardin (MD); Senator Barbara Mikulski (MD); Senator Mark Warner (VA); Senator Tim Kaine (VA); Senator Bill Nelson (FL); Congresswoman Donna Edwards (MD); Congressman John Delaney (MD); Congressman Chris Van Hollen (MD); Congressman John Sarbanes (MD); Congressman Steny Hoyer (MD); Congressman Scott Rigell (VA); Congressman Robert Scott (VA); Congressman Bob Goodlatte (VA); Congressman Patrick Murphy (FL); Congresswoman Lois Frankel (FL); Congressman David Jolly (FL) and Congressman Daniel Webster (FL).

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 109,439 people on the kidney transplant waiting list.

In additional to a broad range of relationships in the United States Congress and among allied kidney organizations, AAKP works very closely with Federal agencies and senior leaders across government to inform policy and regulatory decisions related to kidney disease care and prevention as well as dialysis and kidney transplantation. These agencies include the Centers for Medicare and Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), the Center for Medicare & Medicaid Innovation (CMMI), the Government Accountability Office (GAO), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), as well as the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

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.