Several important pieces of legislation have been introduced in the current Congress, and we are actively working with the U.S. Department of Health and Human Services (HHS) on regulations that would affect kidney patients and their access to life-sustaining health care.

Kidney legislation before Congress

  • Access to Marketplace Insurance Act (H.R. 3742)

    This bill, introduced in October 2015 by Rep. Kevin Cramer (D-ND), would prohibit insurance companies from discriminating against individuals with end-stage renal disease (ESRD) on dialysis by requiring that insurance companies accept health insurance premium payments directly from charitable organizations like AKF. Currently, the Centers for Medicare and Medicaid Services (CMS) requires insurance companies to accept payments directly from the Ryan White HIV/AIDS on behalf of patients with HIV/AIDS, but CMS does not require insurance companies to accept payments directly from other organizations on behalf of individuals with other serious medical conditions. Without a specific requirement from CMS, some insurance companies are now choosing to refuse the direct health insurance premium payments from us and other organizations, which is discrimination against individuals with other medical conditions. The Access to Marketplace Insurance Act would require that insurance companies accept premium payments directly from organizations like AKF, which makes payments to health insurance companies on behalf of low-income and financially struggling dialysis patients. If enacted, the bill would stop the current discrimination. Contact your representative to urge him or her to support this important legislation.
  • 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.

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Proposed regulations

  • AKF comments on proposed ACA rule concerning nondiscrimination in health care

    In September 2015 the Office of Civil Rights at the Department of Health and Human Services (HHS) released a notice of proposed rulemaking entitled Nondiscrimination in Health Programs and Activities. The rule explains how HHS would implement Section 1557 of the Affordable Care Act (ACA), which prohibits the discrimination on the basis of race, color, national origin, sex, age or disability in certain health programs and activities. We commented on the proposed rule and explained the discrimination that dialysis patients face by some insurance companies accepting third-party payments by the Ryan White HIV/AIDS program on behalf of people with HIV or AIDS, but rejecting third-party payments by AKF on behalf of people with ESRD on dialysis.
  • AKF comments on proposed benefits and payment parameters for qualified health plans in 2017

    In December 2015 HHS issued a proposed rule entitled Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2017. The rule provided another opportunity for us to urge HHS to require that health insurance companies accept our health insurance premium payments directly on behalf of the dialysis patients we serve. The proposed rule announced that HHS was considering requiring health insurance companies to accept third-party payments from nonprofit charitable organizations, but instituting certain “guardrails.” One proposed guardrail was only allowing premium payments for individuals who are not eligible for other minimal essential coverage (MEC). Because Medicare is an MEC, and because most patients with end-stage renal disease (ESRD) on dialysis are eligible for Medicare, we have serious concerns that dialysis patients would not be protected because of this guardrail. In our comments, we stressed the difference between eligibility for an MEC and enrollment in an MEC. We emphasized that ESRD patients who are eligible for Medicare deserve the choice to stay on their private insurance for as long as the law allows and should not be forced to immediately go onto Medicare.

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