Thank you to all our advocates who collaborated with us in 2016 to fight for kidney patients. Your advocacy efforts helped encourage the passing of legislation that supports the needs of kidney patients nationwide.

As many of you know, we are the nation’s largest nonprofit serving people with kidney disease and we help 1 in 5 U.S. dialysis patients maintain their health insurance coverage, which provides access to lifesaving health care. Through our Health Insurance Premium Program (HIPP), we pay health insurance premiums for financially struggling dialysis patients. Although end-stage renal disease (ESRD) patients may be eligible for Medicare or Medicaid, some choose to stay on private insurance for a number of reasons including provider networks, accessibility and more covered benefits. In 2017 we will continue to work with Congress and the Administration to ensure that ESRD patients have a choice of the health care coverage that best fits their needs—even if they need charitable assistance to pay for it. 

We look forward to working with you to advocate on the behalf of kidney patients to produce better health outcomes and improve access to care.

New administration will bring changes in 2017

President Trump, the new Department of Health and Human Services (HHS) Secretary Tom Price and the Republican-majority led House and Senate intend to bring changes to the Affordable Care Act (ACA), Medicaid and Medicare in 2017. We will assess how these changes are likely to affect ESRD patients on dialysis and advocate for policies that provide patients with the best comprehensive and affordable coverage. ESRD patients deserve a health insurance plan that best suits their personal needs and provides them with the ability to make their own choices in health care.
In the coming months, as the Trump Administration’s plans for the Affordable Care Act and other health care services become clearer, we will call on you to contact your elected officials. The Trump Administration and Congress need to know the unique circumstances of ESRD patients and your voices as constituents will be especially important.

Return to top

Court strikes down CMS interim final rule (IFR) allowing insurers to veto coverage for low-income ESRD patients

On December 13, 2016, the Centers for Medicare & Medicaid Services (CMS) released an interim final rule (IFR) entitled the Medicare Program; Conditions for Coverage for End-Stage Renal Disease Facilities-Third Party Payment. The IFR would have required approval from insurers before ESRD patients could use charitable assistance to pay their premiums—which would have allowed insurers to deny health care coverage to low-income ESRD patients. The rule was to become effective January 14, 2017.

CMS said this would create a more transparent process to ensure that dialysis patients had the information they needed to understand their coverage options, which can include Medicare, Medicaid, COBRA, employer group health plans, and qualified health plans (QHPs) purchased on the ACA insurance Marketplace (Exchange).

On January 25, 2017, Judge Amos Mazzant III, a federal judge for the United States District Court for the Eastern District of Texas, entered a preliminary injunction preventing CMS from implementing or enforcing the IFR. We were pleased to note Judge Mazzant’s understanding of the possible impact of the IFR on ESRD patients:  “Not all ESRD [end-stage renal disease] patients qualify for Medicare, and Medicare does not cover family members. Further, many health care providers do not accept Medicare. Therefore, some ESRD patients and their families could lose access to their health care providers or even lose insurance coverage altogether.”


Return to top

Health care bill ends prohibition on dialysis patients enrolling in Medicare Advantage

On December 13, 2016, President Barack Obama signed into law the 21st Century Cures Act, which increases biomedical research at the National Institutes of Health, better access to mental health services and improving outcomes in health care. The bill allows individuals with ESRD to enroll in Medicare Advantage (MA) plans beginning in 2021. Currently, Medicare beneficiaries was in MA programs prior to going on dialysis can stay in the MA plan. Anyone already on dialysis could not enroll in an MA plan.

Medicare Advantage is a program where Medicare pays a private insurance company to provide all care to a Medicare beneficiary. Many ESRD patients would benefit from having the choice to enter an MA plan because they typically provide care coordination and disease management as well services that are not covered by traditional Medicare, such as vision and dental. MA plans also have lower copays and coinsurance than traditional Medicare, which only covers 80 percent of costs. We are pleased that ESRD patients will have the option to enroll in MA beginning in 2021.

Return to top

Advocates visited legislator home districts in August

Last summer we brought advocates together with their members of Congress in their home districts during the August District Work Period. AKF advocates and staff members met with members of Congress in Georgia, Texas, California, Tennessee, Mississippi, New Jersey, Michigan and Wisconsin, and elected officials heard directly from their constituents about the importance of making sure ESRD patients can have a choice of insurance.

Some insurance companies want to make it more difficult, if not impossible, for nonprofit organizations like AKF to help pay for someone’s health insurance. It is important for members of Congress to know that their constituents with ESRD deserve a choice in health insurance, even if they rely on charitable assistance to pay for it.
It can be very difficult for people living with kidney failure to travel any distance, let alone to Washington, to meet with elected their representatives, so we brought the meetings to the members of Congress in their local offices.
We will hold more of these meetings in 2017. If you would like to be involved with future meetings, or other advocacy efforts like writing a letter to your congressman, please contact Ben Shlesinger at or 301-984-6636.

Return to top