American Kidney Fund 2018 Public Policy Agenda and Charitable Premium Assistance Advocacy

The American Kidney Fund (AKF) has set its 2018 public policy agenda, and our top policy priority is fighting insurance discrimination against patients with end-stage renal disease (ESRD). Recently, there have been new efforts by certain groups, at the federal and state level, to mislead the public and policymakers on charitable premium assistance and the work of AKF. More details are provided below. AKF has responded to these efforts and will continue to fight discriminatory insurance industry practices that threaten access to care for low income kidney disease patients.

We look forward to working with our advocates in this important fight. AKF’s efforts are strengthened when we can work with kidney patients, their caregivers and their loved ones to advocate on this and other vital issues. If you want to be a part of our Advocacy Network, please click here.

AKF’s other policy priorities for 2018 include:

  • Supporting Medigap reform that would ensure all Medicare ESRD beneficiaries have access to supplemental Medigap insurance, regardless of age
  • Fighting other insurance industry practices that discriminate against patients with chronic diseases
  • Encouraging organ donation through legislation that protects living organ donors
  • Supporting comprehensive immunosuppressive drug coverage for kidney transplant patients
  • Stabilizing and improving access to care under the Affordable Care Act
  • Protecting Medicaid coverage and funding for the Medicare and Medicaid programs
  • Ensuring adequate funding for research and kidney programs

Federal activity on charitable premium assistance

On April 16, a coalition that includes insurers, employer groups, and a labor union sent a letter to the Department of Health and Human Services (HHS) Secretary urging the department to limit the ability of organizations like AKF to provide financial assistance to low income kidney disease patients who need help paying for their health coverage. AKF sent our own letter to HHS and issued a statement that corrects the misleading statements and falsehoods in the insurer letter and sets the record straight on AKF’s mission and Health Insurance Premium Program (HIPP).

We explain that the goal of our financial assistance program “is to make health coverage possible for those who can least afford it when they get kidney disease” and that “we help patients with any type of insurance plan they’ve chosen, public or private.” In contrast, the objective of the other parties “is to limit the health coverage options of people with kidney failure by forcing them off private insurance and onto government health programs,” without any regard as to whether it is the right coverage for their own situation. Essentially, these groups want to discriminate against kidney disease patients battling an expensive and life-threatening condition and kick them off their insurance, including those patients who have chosen Medicare coverage and need charitable assistance to pay for their Medigap supplemental insurance.

AKF will continue our advocacy efforts on charitable premium assistance and continue to educate policymakers and the public about what’s at stake for kidney patients.

Return to top

California Legislation on Third-Party Payments

On March 23, Senate bill (SB) 1156 was introduced in the California state senate that would limit the ability of nonprofit charitable organizations like AKF to provide financial assistance to California dialysis patients who are unable to afford their health coverage. Most notably, as a condition of being allowed to make a third-party premium payment, the bill would require organizations like AKF to submit an annual statement to the insurer and the Department of Insurance (DOI) attesting that each recipient of premium assistance has applied and been determined ineligible for Medicare coverage and ineligible for financial assistance from California’s Medicaid (Medi-Cal) and ACA Marketplace (Covered California) programs. The bill is supported by the Service International Employees Union (SEIU) and Blue Shield of California.

This legislation would encourage discrimination against low-income ESRD patients based merely on their disability. The bill is a thinly-veiled attempt by insurance companies to kick kidney disease patients, who are disproportionately low-income and minority, off their insurance plans. Although the bill is poorly written and confusing, it would give insurance companies enormous power to determine which patients they would accept AKF premium support from and make it extremely difficult for ESRD patients to choose the coverage that best suits their needs. This is especially concerning for ESRD patients under the age of 65, because California law prohibits them from enrolling in Medigap supplemental coverage. For those patients, a private commercial plan with an out-of-pocket maximum may be the best plan for them and their families, since they cannot access Medigap coverage that would help them cover the 20 percent of medical expenses (with no out-of-pocket cap) that Medicare Part B does not.   

AKF issued a press release, issued an action alert to our advocates that urges lawmakers to vote no, and launched a landing page on our website informing people how this bill discriminates against ESRD patients and jeopardizes the coverage and care of many of the 67,000 Californians who rely on dialysis to stay alive. AKF staff has had several meetings with members of the California Senate Health Committee in Sacramento to educate them on AKF programs and how this bill will harm kidney disease patients. The Senate Health Committee held a hearing on the bill on April 18, and AKF staff and AKF advocate Lori Noyes provided testimony.

If you live in California, please contact your state lawmakers and urge them to vote no on SB 1156 by using our action alert and calling their offices. You can look up your state lawmakers here.

Return to top

AKF’s 2018 Advocacy Day on Capitol Hill

In March, AKF hosted its annual Advocacy Day on Capitol Hill, working together with 24 kidney patients, caregivers and loved ones from 14 states to share their stories with their representatives and to advocate for important kidney-related legislation.  After spending a day getting to know each other and engaging in advocacy training, the advocates went up to Capitol Hill on World Kidney Day, March 8th, to seek support for two bills: H.R. 3976, the Access to Marketplace Insurance Act, and H.R. 1270, the Living Donor Protection Act.

H.R. 3976 would protect patient access to health coverage by requiring insurance companies to accept payments from nonprofit charitable organizations like AKF that serve people who are living with serious health conditions and need charitable assistance to stay insured. This would help ensure that financially vulnerable patients with chronic conditions such as kidney disease are protected against discrimination. The bill was introduced by Congressman Kevin Cramer of North Dakota and currently has 133 cosponsors.

H.R. 1270 would protect living organ donors by prohibiting insurance companies from denying or limiting coverage for life, disability and long-term care insurance. The bill would also clarify that living organ donors may use the Family and Medical Leave Act to recover from donation surgery and maintain job security. The legislation was introduced by Congressman Jerrold Nadler of New York and currently has 61 cosponsors.

As part of the day’s activities, AKF also hosted a well-attended congressional briefing in the U.S. Capitol Visitors Center entitled “Women and Kidney Disease.” In honor of World Kidney Day and International Women’s Day, the briefing examined the importance of women’s kidney health and its impact on all aspects of a woman’s life. Congresswoman and co-chair of the Congressional Kidney Caucus, Suzan DelBene of Washington, provided opening remarks, and Dr. Jessica Tangren, a nephrologist and current AKF Clinical Scientist in Nephrology fellow, presented her research on pregnancy and dialysis. The briefing also featured several advocates who shared their stories as dialysis patients caring for young children and as organ donors for their loved ones.

Photo gallery from AKF’s Advocacy Day
Video of AKF congressional briefing, “Women and Kidney Disease”
Send an Action Alert to your representative, asking them to support H.R. 3976 and H.R. 1270

Return to top

Kidney-related provisions in Bipartisan Budget Act of 2018

Congress passed a bipartisan budget deal on February 9 that raised the budget caps set forth in a 2011 congressional budget agreement which mandated across-the-board budget cuts known as a sequester. The budget caps deal increased defense and domestic spending by about $300 billion over two years, and raised the debt ceiling until March 2019. Reaching an agreement on increasing the budget caps established topline spending levels that allowed Congress to proceed with appropriations bills that will fund the government for the rest of this fiscal year and fiscal year 2019.

The legislation also incorporated several health care provisions, including the Senate CHRONIC Care Act (S. 870) and the House of Representatives Medicare Part B Improvement Act (H.R. 3178). These bills included the following provisions affecting dialysis patients, which are now passed into law:

  • Permanently reauthorizes Special Needs Plans (SNPs), which are Medicare Advantage plans that exclusively enroll beneficiaries with special needs. There are SNPs for dual-eligible beneficiaries (D-SNPs), institutionalized beneficiaries (I-SNPs) and beneficiaries with certain chronic conditions (C-SNPs), including C-SNPs for ESRD patients.
  • Expands the use of telehealth for Medicare beneficiaries with ESRD who receive home dialysis. Specifically, it allows free standing dialysis facilities and a patient’s home to be originating sites for monthly telehealth clinical assessments, and eliminates geographic restrictions that currently prohibit patients in non-rural areas from using telehealth for clinical assessments. 
  • Allows dialysis facilities to use independent accreditation agencies approved by the Department of Health and Human Services (HHS) Secretary, and directs HHS to conduct surveys and reviews on accrediting agencies and dialysis providers. Currently, in some areas of the country there is a backlog of facilities awaiting accreditation, but unlike hospitals, dialysis facilities have not been allowed to use third-party accreditors.

Return to top

Kidney Research Funding in Government Spending Legislation

On March 23, Congress passed and the president signed into law a $1.3 trillion “omnibus” spending bill that funds the government for the rest of the 2018 fiscal year, which runs through September 30.

The National Institutes of Health (NIH), the primary federal agency responsible for medical and public health research, received $37.1 billion in discretionary funding, a 9 percent increase over the fiscal year 2017 funding level.

Within NIH, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is the institute responsible for kidney disease research, received $1.97 billion in discretionary funding, an increase of 5.3 percent from the previous year’s funding level.

The spending bill also includes $2.5 million for chronic kidney disease within the Centers for Disease Control and Prevention’s (CDC) National Center for Chronic Disease Prevention and Health Promotion. The center brings together data, health care systems and communities to prevent chronic diseases and promote health and wellness for Americans of all ages.

Return to top

CMS/HHS Final Rule: 2019 Notice of Benefit and Payment Parameters

The Department of Health and Human Services (HHS) and the Center for Medicare and Medicaid Services (CMS) released a final rule on the 2019 Notice of Benefit and Payment Parameters. AKF submitted a comment letter in November in response to the proposed rule. We focused our comments on the proposed changes in defining the essential health benefits (EHB) package, expressing our concern that the changes could weaken the level of meaningful health coverage available to individuals with a chronic disease.

In the final rule, CMS finalized its proposals in allowing states greater flexibility in defining their EHB benchmark plan, with certain adjustments from the proposed rule. CMS delayed the effective date to the EHB changes to the 2020 plan year, instead of 2019. Also of note, CMS acknowledged that due to the changes, “Consumers who have specific health needs may also be affected by the policy… depending on the selection made by the State in which the consumer lives, consumers with less comprehensive plans may no longer have coverage for certain services. In other States, again depending on State choices, consumers may gain coverage for some services.”

Return to top