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. 3976)

This bill, introduced in October 2017 by Rep. Kevin Cramer (D-ND), would prohibit insurance companies from discriminating against low-income individuals with end-stage renal disease (ESRD) on dialysis by requiring that they 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 there is no such requirement for insurers to accept payments from charitable organizations for other serious medical conditions. Without a specific requirement from CMS, some insurance companies are choosing to refuse the direct health insurance premium payments from us and other organizations, jeopardizing the access of many chronically ill, low-income people to needed health insurance. If enacted, the Access to Marketplace Insurance Act would stop this discriminatory practice. Contact your representative to urge him or her to support this important legislation.

The Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. H.R.2644, S. 1890)

We strongly support the Chronic Kidney Disease Improvement in Research and Treatment Act of 2017 (H.R. 1130, S. 598), introduced by Representatives Tom Marino (R-PA), John Lewis (D-GA) and Peter Roskam (R-IL) in the House of Representatives and by Senators Ben Cardin (D-MD), Roy Blunt (R-MO), and Bill Nelson (D-FL) in the U.S. Senate.  Among several provisions relating to kidney disease, this legislation would require insurers who offer Medicare Supplemental Plans (Medigap) to extend those plans to individuals under the age of 65 with end-stage renal disease or ESRD. Currently, there are 21 states where insurers are not required to offer Medigap insurance to ESRD patients under age 65. . The bill would also expand patient access to kidney disease education programs and home dialysis treatment options and would more efficiently manage and coordinate biomedical research, setting the nation on a path toward a cure for kidney disease. The legislation also mandates a federal study to better understand the progression of kidney disease and treatment of kidney failure in minority populations.

The Living Donor Protection Act (H.R. 1270)

The Living Donor Protection Act of 2017 (H.R. 1270), introduced by Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA), would remove many barriers to living organ donation by expanding the Family and Medical Leave Act (FMLA) to include organ donation as well as end many types of insurance discrimination that living donors face.

The bill would prohibit insurers from:

  • Declining or limiting coverage of a person under any life insurance policy, disability insurance policy, or long-term care insurance policy due to the status of such a person as a living organ donor;
  • Precluding a person from donating all or part of an organ as a condition of receiving a life insurance policy, disability insurance policy, or long-term care insurance policy;
  • Considering the status of a person as a living organ donor in determining the premium rate for such a person.

The bill also changes the FMLA to include organ donation surgery as a qualifying medical condition that would allow those who donate an organ to take the leave afforded to people under FMLA.  Finally, the bill requires the department of Health and Human Services to update their website, brochures, and other media regarding live donation and access to insurance for living donors.

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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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