March 13, 2020 – Joint letter for $3 billion request for NIH over FY 2020, including increase for NIDDK

Admin

March 13, 2020

Dear Chairman DeLauro, Chairman Blunt, Representative Cole, and Senator Murray:

On behalf of the undersigned organizations, representing kidney patient advocates and health professionals dedicated to improving patient care, thank you for your steadfast commitment to the National Institutes of Health (NIH) and leadership, including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). As you draft the Labor, Health and Human Services, Education and Related Agencies appropriations legislation for FY 2021, we respectfully request $3 billion for NIH over FY 2020 levels, including a robust funding increase for NIDDK that is at least proportional. In addition, we urge you to consider a Special Statutory Funding Program for Kidney Research at $150 million per year over 10 years.

A January 2017 Government Accountability Office (GAO) report highlighted the pressing need for investment in kidney research; GAO found that the annual cost for care of the approximately 650,000 patients in the Medicare End-Stage Renal Disease (ESRD) program exceeded the budget allocation for the entire NIH. While NIH’s budget allocation has grown since that time, we still dedicate equivalent of approximately just 5 percent of the annual total cost of care for kidney failure to kidney research at the NIH.

Since the GAO study was published, the number of patients with kidney diseases and associated costs to the taxpayer have also risen. There are now more than 720,000 Americans living with kidney failure, and Medicare spends $35 billion managing kidney failure and $116 billion managing kidney diseases, 15% of all Medicare spending. Greater investment in kidney research should be an urgent priority to deliver better outcomes for patients and bring greater value to the Medicare program.

As the GAO highlighted, Congress made a commitment to treat all Americans with kidney failure through the Medicare End-Stage Renal Disease (ESRD) Program—the only health condition for which Medicare automatically provides coverage regardless of age. This unique commitment underscores the imperative for Congress to foster innovation and discovery in kidney care.

Our organizations believe the Special Statutory Funding Program for Type 1 Diabetes Research provides an ideal model to foster breakthroughs in kidney therapies and cures. This Special Diabetes Program has generated remarkable progress for diabetes patients, including the development of the Artificial Pancreas. We urge your support for an additional $150 million per year over 10 years to establish a similar program NIDDK focused kidney research—a Special Statutory Funding Program for Kidney Research—supplementing regularly appropriated funds that the NIDDK receives.

NIDDK funds the vast majority of federal research in kidney diseases, and despite the immense gap between the federal government’s expenditures on kidney care and its investment in kidney research, NIDDK-funded scientists have produced several major breakthroughs in the past several years that require further investment to stimulate therapeutic advancements. For example, geneticists focused on the kidney have made advances in understanding the genes that cause kidney failure, and other kidney scientists have developed an innovative method to determine if new drugs cause kidney injury before giving them to patients in clinical trials.

NIDDK launched the Kidney Precision Medicine Project that will pinpoint targets for novel therapies—setting the stage for personalized medicine in kidney care. Additional, sustained funding is needed to accelerate these and other novel opportunities to improve the care of patients with kidney disease and bring better value to the Medicare ESRD program.

Thank you again for your leadership, and for your consideration of our request. Should you have any questions or wish to discuss NIDDK or kidney research in more detail, please contact Erika Miller with the American Society of Pediatric Nephrology at (202) 484-1100 or emiller@dc- crd.com or Rachel Meyer with the American Society of Nephrology at (202) 640-4659 or rmeyer@asn-online.org.

Signed,

Alliance for Home Dialysis

American Association of Kidney Patients

American Kidney Fund

American Nephrology Nurses Association

American Society of Nephrology

American Society of Pediatric Nephrology

American Society of Transplantation

American Society of Transplant Surgeons

Atlantic Dialysis Management Services

Children’s Organ Transplant Association

DaVita

Dialysis Patient Citizens

Fresenius Medical Care

Halpin Foundation

Home Dialyzors United

IGA Nephropathy Foundation of America

Kidney Care Council

Kidney Care Partners

National Kidney Foundation

NephCure Kidney International

Nephrology Nurses Certification Commission

Northwest Kidney Centers

Oxalosis and Hyperoxaluria Foundation

PKD Foundation

Rare Disease Kidney Foundation

Renal Pathology Society

Renal Physicians Association

Renal Support Network

Rogosin Institute

Satellite Healthcare

Transplant Recipients International Organization

Vasculitis Foundation

Veterans Transplantation Association

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February 14, 2020 – Dental Access Letter to HHS Secretary Azar

We applaud your efforts to deliver on President Trump’s Advancing American Kidney Health Initiative. You have stated that the U.S. Department of Health and Human Services (HHS) will reform regulations so that fewer Americans suffer kidney failure, more options are available for dialysis patients, and more organs are available for transplant.


Admin
We applaud your efforts to deliver on President Trump’s Advancing American Kidney Health Initiative. You have stated that the U.S. Department of Health and Human Services (HHS) will reform regulations so that fewer Americans suffer kidney failure, more options are available for dialysis patients, and more organs are available for transplant.

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Message From AAKP President: Winter 2019

Admin
Welcome to 2019! As we enter the new year, I want to thank AAKP’s professional staff as well as our loyal patients, caregivers, and professional members for all of their support during a very successful 2018. Also, I want to acknowledge the tremendous support received from our allies and industry partners who embraced the concept of patient engagement and have worked with us to infuse AAKP’s culture further into the renal community.
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April 23, 2018 –Request Funding for National Institutes of Health (NIH)


Admin
To download the official letter – click here. April 23, 2018 Dear Chairman Cole, Chairman Blunt, Representative DeLauro, and Senator Murray: On behalf of the undersigned organizations, representing kidney patient advocates and health professionals dedicated to improving patient care, thank you for your steadfast commitment to the National Institutes of Health (NIH)

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February 28, 2018 – Dialysis PATIENTS Demonstration Act of 2017 (H.R. 4143)

ASN represents more than 18,000 physicians, scientists, nurses, and other health
professionals dedicated to improving the lives of people with kidney diseases. The
society’s membership includes approximately 90 percent of the nephrologists in the
United States. ASN is a not-for-profit organization dedicated to promoting excellence in
kidney care and ensuring access to patient-centered high-quality care, regardless of
socioeconomic status, geographic location, or demographic characteristics.

asn-aakpletter-patientact-housesenate_page_1

Admin
ASN represents more than 18,000 physicians, scientists, nurses, and other health
professionals dedicated to improving the lives of people with kidney diseases. The
society’s membership includes approximately 90 percent of the nephrologists in the
United States. ASN is a not-for-profit organization dedicated to promoting excellence in
kidney care and ensuring access to patient-centered high-quality care, regardless of
socioeconomic status, geographic location, or demographic characteristics.

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December 1, 2017 – AAKP expresses concerns about continued access to kidney transplantation with the Dialysis PATIENTS Demonstration Act of 2017 (S. 2065 / H.R. 4143)


Admin
On behalf of the leading national transplant organizations, we write to you as original sponsors of the “Dialysis PATIENTS Demonstration Act of 2017” (H.R. 4143) to express our significant concerns about the potential impact of this legislation on Medicare beneficiaries’ continued access to kidney transplantation. Download the Official Letter House-and-Senate-Patient-Acts-Letter-20171201.

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October 20, 2017 – H.R. 1133 Letter in Support of the Veterans Transplant Coverage Act of 2017


Admin
October 20, 2017 Representative John R. Carter U.S. House of Representatives 2110 Rayburn House Office Building Washington D.C. 20015 Re: Letter in Support of the Veterans Transplant Coverage Act of 2017   Dear Representative Carter, The undersigned transplant patient, physician, and other provider organizations write in strong support of H.R. 1133, “The Veterans Transplant Coverage Act of 2017.” At this time, Department of Veterans Affairs (VA)

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October 16, 2017 – Protecting Access to Pain Relief (PAPR) Coalition written comments in response to a meeting of the Interagency Pain Research Coordinating Committee (IPRCC)


Admin
October 16, 2017 Linda L. Porter, PhD Pain Policy Advisor, Office of Pain Policy Office of the Director National Institute of Neurological Disorders and Stroke 31 Center Drive, Room 8A31 Bethesda, MD 20892 Dear Dr. Porter: As undersigned members of the Protecting Access to Pain Relief (PAPR) Coalition, we wish to submit written comments in response to a meeting of the Interagency Pain Research Coordinating Committee (IPRCC) scheduled for October 23, 2017.

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October 16, 2017 – Letter to Acting Sect. Hargan on Nat’l Clinical Care Commission Act


Admin
Eric D. Hargan                                                                                                                                                                              October 16, 2017 Acting Secretary U.S. Department of Health and Human Services Washington, D.C.

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