American Kidney Fund Urges HHS to Withdraw Rule that Allows Insurer Discrimination Against Low-Income Dialysis Patients


Group warns of devastating impact on low-income patients

ROCKVILLE, Maryland (January 11, 2017) – The American Kidney Fund (AKF) today urged the U.S. Department of Health and Human Services (HHS) to withdraw an interim final rule (IFR) scheduled to go into effect on Friday that would give insurers the ability to deny health care coverage to low-income dialysis patients who need charitable assistance to afford their premiums, causing irrevocable harm to people living with end-stage renal disease (ESRD).

By forcing patients who need charitable assistance to seek permission from insurers before applying for coverage in the individual market, the rule effectively cedes all decision-making to insurers, who have already taken steps to bar low-income dialysis patients from accessing their plans.

“This rule poses a direct threat to the health and welfare of people living with ESRD,” said LaVarne A. Burton, president and chief executive officer of the American Kidney Fund. “ESRD patients should have the same right as anyone else to choose their insurance coverage and to seek financial assistance to pay the premiums.”

HHS plans to put the new rule into effect on January 13, just two days after the close of public comment. AKF has joined with a number of patient advocacy organizations in calling for the withdrawal of the regulation because of its provision to give insurance plans veto power on coverage decisions affecting low-income, disabled ESRD patients. Hundreds of kidney patients and their loved ones sent messages to Congress this week, urging lawmakers to tell HHS to withdraw the rule.

For about 6,400 dialysis patients who stand to lose access to individual market plans, the rule would have a devastating effect. Most but not all would be eligible for Medicare, but about half the states do not mandate Medigap coverage for ESRD patients under 65, exposing any patients not eligible for Medicaid to an uncapped, 20 percent out-of-pocket share of costs under Medicare Part B. There is no one-size-fits-all coverage solution for ESRD patients, yet this rule removes one option that is essential for some patients.

Nearly 500,000 Americans are living with ESRD, a devastating and life-changing disease that leaves them unable to cleanse their blood of life-threatening toxins and requires a treatment regimen of dialysis three time a week to stay alive. In its comment letter, AKF notes that the group that is affected by this rule is low-income, unemployed, and overwhelmingly comprised of racial and ethnic minorities.

Most ESRD patients are unable to work and see their income plummet. For more than 20 years, AKF has provided financial assistance to ESRD patients who need help to pay the cost of the coverage for Medicare, Medigap, COBRA, employer plans, and since 2013, coverage in the individual market created by the Affordable Care Act. If the rule goes into effect those choices will narrow.

“HHS is irresponsibly upending the entire safety net that exists for dialysis patients who can’t afford their health coverage,” said Burton. “This cannot be the result that the agency intended to achieve when it set out to protect ESRD patients from improper steering.”

AKF made clear in its comments that it unequivocally opposes any steering of patients in their selection of health plans or health care providers, noting that those decisions should always be made by patients. 

AKF commended CMS’ goal of increasing transparency around patient choice of insurance and charitable assistance, voicing strong support for these measures as absolutely necessary to the empowerment and protection of ESRD patients. However, AKF said, because of the rule’s provision that gives insurance companies veto power on covering ESRD patients, the organization is calling for its withdrawal.

AKF has been the safety net for U.S. dialysis patients since it was founded in 1971. In 1997 AKF established the federally approved Health Insurance Premium Program (HIPP), in accordance with the guardrails detailed in Advisory Opinion 97-1 (AO 97-1) from the HHS Office of Inspector General (OIG). In 2016, AKF helped nearly 80,000 people through this program. About two-thirds of HIPP grant recipients receive support for Medicare Part B and Medigap premiums. The remaining one-third received AKF assistance for COBRA, employer group health plans, and commercial premiums, including fewer than 7,000 who receive assistance to buy coverage in the health insurance marketplaces.

By keeping patients insured, AKF’s HIPP program provides access to all of the covered benefits under patients’ plans, including transplant work-ups and kidney transplants.

AKF’s full comment can be found at

About the American Kidney Fund

As the nation’s leading nonprofit working on behalf of the 31 million Americans with kidney disease, the American Kidney Fund is dedicated to ensuring that every kidney patient has access to health care, and that every person at risk for kidney disease is empowered to prevent it. AKF provides a complete spectrum of programs and services: prevention outreach, top-rated health educational resources, and direct financial assistance enabling 1 in 5 U.S. dialysis patients to access lifesaving medical care, including dialysis and transplantation.

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