Public Comments & Correspondence
This section includes public comments & correspondence made by the American Association of Kidney Patients staff or board members individually or in conjunction with other organizations.
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2021
Letter to Rep. DelBene re Support of Vascular Graft Research 4.13.21
The Honorable Suzan DelBeneVice Chair of Congressional Caucus on DiabetesU.S. House of RepresentativesWashington, DC 20515 Dear Representative DelBene: As stakeholders in supporting new technologies that enhance health and quality of life for patients suffering from kidney disease, vascular disease, heart disease, and vascular trauma, we are asking for your kind supportof the attached report language … Continue reading "AAKP Key Correspondence" Read More
Letter to Senator Murray re Support of Vascular Graft Research
The Honorable Patty MurrayDefense Appropriations SubcommitteeU.S. SenateWashington, D.C. 20510 Dear Senator Murray: On behalf of of a coalition of concerned Washington State-based stakeholders, I am writing to you to request your support of continued federal research for new synthetic vascular graft technology. I joined this auspicious group of concerned entities and felt that I could … Continue reading "AAKP Key Correspondence" Read More
QALY Coalition Letter 4.21.21
Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities. As organizations representing patients and people with disabilities, we call on policymakers to work to ensure the most vulnerable populations among us, including people with disabilities, will not be … Continue reading "AAKP Key Correspondence" Read More
STATEMENT ON COMPREHENSIVE LIVING ORGAN DONOR PROTECTIONS
STATEMENT ON COMPREHENSIVE LIVING ORGAN DONOR PROTECTIONS March is National Kidney Month and April is National Donate Life Month. As leading, independent, national organizations representing patients, organ donors and their families, transplant surgeons, and transplant health professionals, the American Association of Kidney Patients (AAKP), the American Society of Transplant Surgeons (ASTS), the American Society of … Continue reading "AAKP Key Correspondence" Read More
2020
December 16, 2020: AAKP & AST joint letter to FDA on importance of supporting rational clinical trial design and support for kidney transplant desensitization
December 16, 2020 Nikolay P. Nikolov, MDDirector, Division of Rheumatology and Transplant MedicineFood and Drug AdministrationCenter for Drug Evaluation and ResearchDivision of Rheumatology and Transplant Medicine5901-B Ammendale RoadBeltsville, MD 20705-1266Re: Importance of supporting rational clinical trial design and support for kidney transplant desensitization Dear Dr. Nikolov: On behalf of the American Society of Transplantation (AST), … Continue reading "AAKP Key Correspondence" Read More
AAKP, ASTS, AST letter to Congress expressing concerns about BETTER Kidney Care Act – November 2020
November 23, 2020 Congressman Earl Blumenauer Congressman Jason Smith 1111 Longworth House Office Building 2418 Rayburn House Office Building Washington, D.C. 20515 Washington, D.C. 20515 Congressman Tony Cardenas Congressman Brad Wenstrup 2438 Rayburn House Office Building 2419 Rayburn House Office Building Washington, D.C. 20515 Washington, D.C. 20515 Congressman G.K. Butterfield Senator Todd Young 2080 Rayburn … Continue reading "AAKP Key Correspondence" Read More
November 13, 2020 - Partnership to Improve Patient Care (PIPC) letter commenting on PCORI’s Proposed Principles for the Consideration of the Full Range of Outcomes Data
November 13, 2020 Nakela Cook, MD, MPHExecutive DirectorPatient-Centered Outcomes Research Institute1828 L Street NW, Suite 900Washington, DC 20036 Dear Dr. Cook:We are writing to comment on PCORI’s Proposed Principles for the Consideration of the Full Range of Outcomes Data. We applaud PCORI for the thoughtful recognition of its authorizing statute’s limitations that prohibit PCORI from … Continue reading "AAKP Key Correspondence" Read More
Energy and Commerce Letter
October 15, 2020 The Honorable Frank Pallone Chair, Energy and Commerce Comm. 2125 Rayburn House Office BuildingWashington, DC 20515 The Honorable Greg WaldenRanking Member, Energy and Commerce Comm.2322-A Rayburn House Office Building Washington, DC 20515 The Honorable Anna Eshoo Chair, Energy and Commerce Health Subc. 2125 Rayburn House Office Building Washington, DC 20515 Rep. Mike Burgess Ranking Member, E & C … Continue reading "AAKP Key Correspondence" Read More
AST, ASTS & AAKP Request Swift Passage of S. 3353, the Comprehensive Drug Coverage for Kidney Transplant Patients Act, During the 116th Congress
July 17, 2020 The Honorable Mitch McConnellMajority LeaderUnited States Senate The Honorable Charles Grassley ChairmanFinance CommitteeUnited States Senate The Honorable Charles SchumerMinority LeaderUnited States Senate The Honorable Ron WydenRanking MemberFinance CommitteeUnited States Senate RE: AST, ASTS & AAKP Request Swift Passage of S. 3353, the Comprehensive Drug Coverage for Kidney Transplant Patients Act, During the … Continue reading "AAKP Key Correspondence" Read More
Proposed LCD for Percutaneous AV Fistula for Hemodialysis (DL38573)
July 17, 2020 National Government Services Medical Policy Unit P.O. Box 7073 Indianapolis, IN 46207-7073 PartBLCDComments@anthem.com ATTN: Craig Haug, M.D., Medical Director Re: Proposed LCD for Percutaneous AV Fistula for Hemodialysis (DL38573) Dear Dr. Haug: The American Association of Kidney Patients (AAKP) and the Renal Physicians Association (RPA) are jointly contacting you to express concerns … Continue reading "AAKP Key Correspondence" Read More
Of Presidents, Policies, and Patients
July 10, 2020 Paul T. Conway and Edward V. Hickey III As two kidney patients who have lived at the intersection of politics, policy, and presidents throughout our personal and professional lives, we are occasionally asked about our experiences and knowledge of the Executive Branch and White House operations. As the one year anniversary of … Continue reading "AAKP Key Correspondence" Read More
Thoughts on Juneteenth, From AAKP President Richard Knight
Mr. Knight is a former hemodialysis patient who received a kidney transplant for a living donor 14 years ago. AAKP is the largest kidney patient organization in America with a proud 50 year history of matching patients to companies conducting clinical trials for new therapeutics, diagnostics and devices. Dear Friends and Allies, Over the past … Continue reading "AAKP Key Correspondence" Read More
Protecting Access to Pain Relief (PAPR) Coalition, Request for Comment entitled “Management of Acute and Chronic Pain”
On behalf of the undersigned members of the Protecting Access to Pain Relief (PAPR) Coalition, please find written comments in response to the Request for Comment entitled “Management of Acute and Chronic Pain” (Docket No. CDC-2020-0029) issued by the Centers for Disease Control and Prevention (CDC). Read More
Doctors Flummoxed By Long-Term Organ Damage In COVID-19 Survivors
Talking Points Memo (TPM)By Josh Kovensky We still don’t know how much we don’t know about COVID-19. The immediate effects of the disease are devastating.But what has confronted doctors and patients alike since American hospitals began to fill up in March has been another, deeply sobering prospect: that of long-term, maybe permanent organ damage among … Continue reading "AAKP Key Correspondence" Read More
Patient Organizations Engage on All Levels of COVID-19 Advocacy and Education
ASN KidneyNewsBy Eric Seaborg Like every corner of the medical community, kidney patient advocacy groups have mobilized in response to the COVID-19 pandemic. The many responses include direct monetary grants to patients; education for patients about the virus and how they can react; increased efforts for communication, networking, and counseling; and mobilization for political activity. … Continue reading "AAKP Key Correspondence" Read More
Consortium for Citizens with Disabilities
Download the official letter April 21, 2020 The Honorable Steven T. Mnuchin Secretary of Treasury16US Department of the Treasury1500 Pennsylvania Avenue NWWashington, DC 20220 The Honorable Andrew SaulCommissioner of Social Security Administration US Social Security Administration1300 D Street SW Washington, DC 20024 The Honorable Robert WilkieSecretary of Veterans AffairsUS Department of Veterans Affairs 810 Vermont … Continue reading "AAKP Key Correspondence" Read More
Advocate Letter Supporting Nondiscrimination
Representing millions of patients, people with disabilities and older adults, our organizations are writing to express our strong and urgent support for the Department’s Office for Civil Rights to issue additional guidance to ensure that schemes to ration scarce health care resources during the coronavirus disease 2019 (COVID-19) pandemic comply with federal nondiscrimination laws. Read More
March 13, 2020 - Joint letter for $3 billion request for NIH over FY 2020, including increase for NIDDK
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 … Continue reading "AAKP Key Correspondence" Read More
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. Read More
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