Decisions made by Congress and federal and state government agencies affect the quality of care that kidney patients receive, the amount of available funding for kidney disease research, and a myriad of other factors that impact the kidney patient experience. The American Kidney Fund continuously monitors regulations, legislation and policy issues that may affect kidney patients and their families. We work with Congress, the administration, federal agencies, and state governments to advance a legislative and regulatory policy agenda that will protect the patients we serve.
Our policy priorities
Our continuous monitoring of federal and state legislative and regulatory activity enables us to identify issues that may affect the patients we serve. With so many ongoing changes to our nation’s health care system, our work in this area has never been more important. These policy priorities guide us in our advocacy work throughout the year, as we work to ensure that Congress, regulators and state legislators understand how new laws or regulations may affect kidney patients. Learn more about our current policy priorities.
Several important pieces of legislation have been introduced in the current Congress, and we are actively working to enact these bills that would affect kidney patients and their access to life-sustaining health care.
Resources and information
Do you want to find information about the U.S. Senate or House of Representatives or your elected state representatives? Are you looking for data or information from the government on end-stage renal disease (ESRD), transplantation or medical research? Use the links below.
- Congress.gov. The Library of Congress presents this site, which includes summaries and texts of legislation, links to House and Senate leaders, and has videos on how a bill becomes a law.
- United States House of Representatives. See the latest legislation being considered by the House. This site also contains links to individual representatives’ web pages, committee websites and financial disclosure reports.
- United States Senate. The U.S. Senate’s website includes links to the legislation on the Senate floor, Senate committee websites, and individual Senators’ home pages.
- State legislature websites: You can find the link to your state’s legislature, and from there, you can find your state legislators.
- Health Resources and Services Administration organ donation page. The site includes information on our nation’s transplantation program and how to become a donor.
- United States Renal Data System. USRDS collects, analyzes, and reports information on chronic kidney disease and end-stage renal disease (ESRD) in the United States and publishes an annual report. You can search the annual report for statistics on demographics, new cases (incidence) and treatment types, Medicare spending on ESRD, primary diagnoses, and much more.
- Centers for Disease Control and Prevention Chronic Kidney Disease Initiative. Learn about the CDC’s initiative that aims to implement comprehensive public health strategies to foster kidney health.
AKF’s advocacy and comment letters (2020)
- AKF is working to help identify why so many patients get CKD and genetic counseling has a powerful role to play in that endeavor. Medicare should reimburse genetic counselors, who can offer help to kidney patients. We thank Congressman Dave Loebsack for introducing H.R. 3235, and we proudly support the bill.
- AKF comment letter on ESRD Treatment Choices Model proposed rule
- To fully understand the impact of COVID-19 on minority populations and address it, we need data. AKF joined over 200 other orgs in asking the Department of Health and Human Services to ensure demographic data is collected.
- AKF proudly joined the Transplant Roundtable in urging Senator Mitch McConnell, Senator Chuck Schumer, Chuck Grassley and Senator Ron Wyden to advance legislation that would lift the three year limit on Medicare coverage of immunosuppressive drugs for kidney transplant patients.
- AKF has urged CMS to cover ferric citrate to treat iron deficiency anemia (IDA) for those with chronic kidney disease not on dialysis.
- AKF led a letter signed by 18 organizations urging Congress to dedicate additional resources to modernize public health data systems in order to improve the collection and reporting of key demographic data.
- Older adults and people with disabilities are at high risk of infection, serious illness, and even death from COVID-19. To ensure access to health care, AKF joined 40 other orgs in urging Seema Verma to maintain special enrollment periods for Medicare Parts A, B, C and D.
- The Energy Commerce hearing on health inequities was an important first step in addressing disparities. AKF submitted important testimony on how minority populations are disproportionately affected by both kidney disease and COVID-19.
- AKF submits the following comments for the record regarding the Ways and Means Committee’s May 27th hearing on “The Disproportionate Impact of COVID-19 on Communities of Color.”
- Tens of millions of hardworking American families are facing the loss of jobs and health care coverage. We joined patients, workers, and health care and health #insurance providers to urge congressional leaders to provide increased support for Medicaid.
- The NIDDKgov needs support to understand why COVID-19 causes acute kidney injury and why people with underlying issues like diabetes have worse health outcomes. AKF joined with 27 other organizations to urge Congress to fund the research.
- During a pandemic, patients should not fear of seeking medical care because of hidden costs. Patients continue to receive surprise bills.
- AKF joined forces with 45 other organizations to urge Secretary Alex Azar and the HHS Office for Civil Rights to create additional guidance to ensure that state and health systems do not discriminate against COVID-19 patients with underlying conditions like ESRD.
- AKF is calling on the National Governors Association, Gov. Larry Hogan and Gov. Andrew Cuomo to carefully consider the impact that relaxing stay-at-home orders have on people with chronic diseases, such as ESRD patients. We need your help to ensure the safety of kidney patients now!
- AKF advocates for those with rare diseases. We proudly joined with 58 orgs to urge HHS to keep the needs of those with rare diseases in mind as they address COVID-19.
- To fully understand the impact of COVID-19 on minority populations and address it, we need data. AKF joined over 200 other orgs in asking Congress to direct the CDC to collect demographic it.
- AKF and 28 other orgs support the Worker Health Coverage Protection Act, which would help furloughed or terminated employees afford and keep their employer sponsored health plan during the #COVID19 crisis.
- Consumers and patients are still in danger of getting surprise bills related to treatment of COVID-19. AKF joined our coalition partners in urging Congress to ban surprise medical bills.
- Understanding why COVID-19 is damaging kidneys in an alarming number of patients is crucial to finding medications and vaccines. AKF joined over 25 other organization requesting Congress increase funds for NIDDK research in coronavirus legislation.
- AKF is one of 48 orgs urging congress to provide additional funding for public health and medical research activities at the CDC and NIH. These funds are critical to respond to the coronavirus crisis.
- With over 588,000 people in the US testing positive for Coronavirus, Congress must include access to affordable and comprehensive health insurance in their next legislative package to combat COVID-19.
- Family and medical leave programs need to be expanded to include coverage of those who the CDC says shouldn’t work due to being high risk for dangerous complications from COVID-19. AKF and over 150 other orgs urged Congress to expand the program!
- AKF joined 75 other orgs to ask for a presumed eligibility for individuals who have applied for Medicare so they can see their doctor before the application has been processed.
- AKF submitted comments to CMS on the MedicareAdvantage proposed rule. We urge CMS to ensure that rules on maximum out-of-pocket limits and network adequacy result in meaningful access to MA plans for ESRD patients, who will be able to enroll in MA plans starting in 2021.
- AKF signed on to the MAPRx coalition letter commenting on the Medicare Advantage and Part D proposed rule. AKF and other organizations urge CMS to consider Part D changes that will lower out-of-pocket costs for beneficiaries and make it easier for them to shop for plans.
- Despite recent action by the federal government, there are still far too many nurses, doctors, and other medical staff on the front lines without the needed face guards, masks, gloves, and gowns. AKF joined 200 patient and provider groups in calling on the Administration to do more.
- ESRD patients cannot be discriminated against when hospitals triage patients who need COVID-19 care and resources are limited. The American Kidney Fund endorsed further directions to states and providers on applying the March 28, 2020 guidance from the HHS Office of Civil Rights to their policies.
- The American Kidney Fund joined thirty organizations in urging CMS and HHS to expand insurance coverage, affordability, and options during the COVID-19 outbreak.
- The American Kidney Fund was successful in fighting with our partners for $150 billion to the states to battle COVID-19
- Medications Access Must be Included in Third COVID-19 package
- Medicaid providers access to emergency loans
- ACA 10th Year Statement and COVID-19
- Protect ESRD Patients in COVID-19 Legislation
- Include Patient Advocacy Groups and Non-Profits Federal Aid Packages
- Protect the Most Vulnerable – COVID 19 Coalition Press Statement
- COVID-19 – Consumer-Patient Protections Senate Letter
- Ensure Patients Receive “No Surprise Bills” Letter to Leadership
- HHS Docket No. HRSA 2019 0001: Removing Financial Disincentives to Living Organ Donation
- CMS-9916-P: Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2021; Notice Requirement for Non-Federal Governmental Plans
AKF’s advocacy and comment letters (2019)
- Section 1557 of the Patient Protection and Affordable Care Act Comment
- MAPRx Coalition Letter on The Prescription Drug Pricing Reduction Act of 2019
- Coalition Letter on OMB Official Poverty Measures (June 21, 2019)
- Comment Letter on Medicare Part D Prescription Drug program (June 6, 2019)
- Letter Supporting Legislation to Stop Surprise Bills (May 21, 2019)
- Coalition Letter to Appropriators in Support of Non-Emergency Medical Transportation (May 7, 2019)
- AKF thanks Congresswoman Rosa DeLauro for her leadership in funding key kidney disease related programs thru the House appropriations process
- AKF comment letter on removal of safe harbor protection for prescription drug rebates
- Coalition response to request for information on lowering health care costs
- AKF comment letter on HHS Notice of Benefit and Payment Parameters for 2020
- AKF comment letter on Part D protected classes
- Partnership for Part D Access coalition letter on Part D protected classes
- MAPRx Coalition letter on Part D protected classes
- Coalition letter on Part D protected classes
- Call for Health Equity to Members of the 116th Congress
AKF’s advocacy and comment letters (2018)
- State Relief and Empowerment Waivers
- KidneyX - Letter of Support
- Navigator Funding Cuts
- Medicare Guidance on Step-Therapy Medicare Advantage
- Copayment Accumulator Programs
- KidneyX Project Comment (Request for Information #1)
- KidneyX Prize Comment (Request for Information #2)
- Work Requirements in Medicaid
- Short-Term, Limited-Duration Insurance, Proposed Rule
- ESRD PPS and QIP Proposed Rule
- Association Health Plans Proposed Rule
AKF’s advocacy and comment letters (2017)
- MassHealth 1115 Waiver on Prescription Drugs
- HHS Notice of Benefit and Payment Parameters for 2019
- ESRD PPS and QIP proposed rule