Our key policy priorities include both legislative and regulatory issues that affect kidney patients, access to health care, quality of care and medical research. To stay informed about legislation and regulations that affect kidney patients, please join our Advocacy Network.

Legislative priorities

  • The Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R. 1130, S. 598)

    We strongly support the Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R. 1130, S. 598). Introduced in Feb. 2015 by Representatives Tom Marino (R-PA), John Lewis (D-GA) and Peter Roskam (R-IL) and Senators Ben Cardin (D-MD), Mike Crapo (R-ID) and Bill Nelson (D-FL), this bill would allow individuals under 65 with kidney failure(end-stage renal disease or ESRD) to enroll in Medicare Advantage plans. It would also expand patient access to kidney disease education programs and home dialysis treatment options. The bill would more efficiently manage and coordinate biomedical research, setting the nation on a path toward a cure for kidney disease. It would require the General Accounting Office (GAO) to assess whether federal funding for CKD research is adequate relative to the expenditures for CKD care and identify gaps in research. The legislation also mandates a federal study to better understand the progression of kidney disease and treatment of kidney failure in minority populations.
  • Comprehensive immunosuppressive drug coverage for kidney transplant patients

    Most recently introduced in the last Congress, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would provide lifetime immunosuppressive drug coverage for kidney transplant patients under Medicare Part B. Kidney transplant patients under age 65 would be eligible to remain in the Medicare Part B program solely for the purpose of receiving these critical medications.

    Immunosuppressive drugs prevent transplanted organs from being rejected. Medicare currently provides 36 months of coverage for immunosuppressive drugs for non-disabled kidney transplant patients under the age of 65. Patients who stop taking immunosuppressive drugs because they can’t afford them face the loss of their transplanted kidney, necessitating a return to dialysis. Providing lifetime coverage for these medications would result in better health outcomes for patients, as well as substantial cost savings to Medicare because fewer transplant patients would need to resume dialysis.

    We strongly support re-introduction and passage of this legislation.

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Regulatory priorities

  • Ensuring the promise of the Affordable Care Act holds true for kidney patients

    The Affordable Care Act (ACA) aims to ensure that all Americans have access to affordable health insurance. This law bars health plans from denying coverage because of pre-existing conditions, and prohibits insurers from dropping people from plans when they become ill. Health insurance coverage is critically important to people with kidney failure. Although most Americans with kidney failure become eligible for Medicare, coverage does not begin until three months after a kidney failure diagnosis. And some individuals with ESRD are not eligible for Medicare due to insufficient work credits. For these patients, the health insurance marketplace may provide coverage they could not otherwise obtain.

    We are monitoring patients’ experiences in the changing health insurance landscape and we are tracking several issues in particular:

    • Third-party premium payments: Through our Health Insurance Premium Program, we help dialysis patients nationwide maintain their health insurance coverage. We submit most of our grants directly to insurance companies, a “third-party payment” premium payment process that ensures patients do not lose coverage due to late or non-payment. Over the past two years, insurance carriers have increasingly rejected these payments from nonprofits like AKF, putting patients' coverage at risk. We are urging the Department of Health and Human Services (HHS) to clarify guidance issued in 2014 around third-party payments for health insurance marketplace plans. We are urging HHS to specify that insurers must accept third-party payments for Marketplace plans from qualified charitable organizations. This clarification will ensure that we are able to continue assisting patients with their health insurance premiums in the most effective and efficient way possible.
    • ESRD treatment options under Marketplace plans: HHS in 2013 issued a final rule on the “essential health benefits” that must be covered in marketplace plans. Treatment for kidney failure is not included in the list of essential health benefits, but it is also not specifically excluded. We had urged HHS to provide specific language on ESRD coverage so that individuals with kidney failure would be sure to have access to appropriate treatment options in each marketplace plan. With the final rule in place, we encourage individuals to compare plans during the enrollment process to evaluate the specific health care benefits each plan offers.
    • Impact of Medicaid expansion: The ACA significantly expanded Medicaid, providing millions more Americans with access to health care; yet some states did not expand their Medicaid programs. We continue to monitor the effect of the changing Medicaid landscape on patients.
    • Network adequacy: The ACA calls for health plans in the Marketplaces to meet standards for network adequacy. As more individuals enter the private insurance market, there may not be enough providers in a network area to ensure that patients have access to dialysis care within specific “time and distance” requirements. We will monitor issues of network adequacy to ensure that individuals with kidney failure have access to provider care and treatment options within a reasonable distance—a critically important factor for patients who rely on dialysis three times weekly to survive.
  • Ensuring patient protections in the ESRD Quality Incentive Program

    The Medicare Improvements for Patients and Providers Act of 2008 created a Quality Incentive Program (QIP) for Medicare’s ESRD program. The QIP, which took effect in 2012, is intended to promote high-quality services in outpatient dialysis care. The QIP links a portion of facilities’ Medicare reimbursement directly to the quality of care patients receive. For those facilities that do not meet or exceed certain standards, the QIP reduces payments. We support the QIP because of its intent to ensure high-quality patient care. We continue to advocate that the performance standards in the QIP are clear and measurable and provide the best patient protections.
  • Tracking the effect of the CMS five-star rating system for dialysis facilities

    It is critically important for dialysis patients to trust that the centers where they have life-sustaining treatment are facilities that provide high-quality care. Patients need a reliable and objective way to compare the quality of dialysis centers to make informed decisions about where to receive care. We believe that the five-star rating system that the Centers for Medicare and Medicaid Services (CMS) has recently added to its Dialysis Facility Compare website will result in patient confusion. The system provides a rating of one to five stars to a dialysis facility based on nine quality measures. The system is confusing because it ranks all dialysis facilities on a bell curve, a methodology forcing some facilities into the lowest one- or two- star ratings even when these facilities may, in reality, provide excellent care. We are monitoring patient responses to the five-star rating system, and are working with other organizations in the kidney community to continue communicating concerns and recommendations for improvement to CMS.

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