AKF Advocates Make Their Voices Heard on Capitol Hill

Advocates on Capitol Hill

To kick off National Kidney Month, American Kidney Fund (AKF) patient-advocates from around the country came to Washington to educate their elected officials about the financial challenges kidney patients face, and to urge lawmakers to put an end to discriminatory practices among some health insurers.

After a day of training, Advocates spoke at a congressional briefing, sharing stories of how living with kidney failure depleted their savings and left them in great financial hardship. Their stories underscored the importance of AKF’s Health Insurance Premium Program (HIPP), our assistance program for all types of insurance plans, including  Medigap, which pays many of the health care costs not covered by Medicare.

Advocates then met with their members of Congress about a problem that jeopardizes the health coverage of many people with kidney failure: The growing refusal of insurance companies to accept health insurance premium payments from nonprofit charitable organizations like AKF on behalf of people with chronic illnesses like kidney failure. Under a 2014 Centers for Medicare and Medicaid Services (CMS) rule, insurance carriers are required to accept third-party payments for Marketplace exchange plans only from federal and state programs, tribal organizations, and the Ryan White HIV/AIDS program.

The Advocates asked their members of Congress to urge CMS to quickly issue new guidance requiring insurers to accept third-party premium payments from nonprofit charitable organizations, and to cosponsor H.R. 3742, the Access to Marketplace Insurance Act. Through rulemaking or legislation, the federal government can require insurance companies to accept health insurance payments from nonprofits like AKF, and thereby protect the health coverage of individuals who rely on charitable assistance.

To contact your U.S. Senators and U.S. Representative about this important issue, our Action Center.

AKF’s Advocacy Day on Capitol Hill was made possible thanks to generous support from Akebia Therapeutics, Genentech and Otsuka America Pharmaceutical, Inc.

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CMS Defers Action on Nonprofit Third-Party Payer Rule

Just days before our patient-advocates arrived for AKF’s Advocacy Day on the Hill, CMS said, in its Final 2017 Notice of Benefit and Payment Parameters (NBPP), it would defer clarifying its guidance directing health insurers to accept third-party premium payments from nonprofit organizations for Marketplace plans.

CMS’s guidance, outlined in its March 2014 Interim Final Rule (IFR), does not prevent insurers from accepting premium payments from third parties such as nonprofits, but it does not require them to do so.  The 2017 NBPP was made final on February 29.

Together with other nonprofit organizations that assist low-income patients, we worked behind the scenes and submitted public comment letters imploring CMS to clarify the rule to protect patients. CMS wanted to include a “guardrail,” or provision, which would only require insurance carriers to accept third-party payments only for individuals who are not eligible for any minimal essential coverage. Medicare is considered minimal essential coverage. Since almost all ESRD patients on dialysis are eligible for Medicare, this guardrail could exclude them.

Our comment letter to CMS stressed that the proposed guardrail could result in these individuals losing their choice to stay on their current insurance. Individuals on dialysis are legally entitled to retain private insurance for 30 months before being required to use Medicare as their primary insurer. Therefore, low-income ESRD patients are legally eligible to participate in a Marketplace QHP for 30 months, and they should be able to receive assistance from charitable organizations such as AKF.

AKF will continue to work to include nonprofit organizations as an organization from whom insurers must accept third party premium assistance. We will continue to update you on this important issue.

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President’s FY 2017 Budget Requests $1.9 Billion for NIDDK

The Obama administration has released its fiscal year 2017 budget request, which aims to shape federal policy by promoting the President’s fiscal recommendations and fiscal priorities, and conveys his spending and tax policy recommendations to Congress.

In the FY 2017 request, the administration recommended $33.136 billion for the National Institutes of Health (NIH), with $1.9 billion of those funds designated to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

Kidney disease research is funded through the NIDDK. The President’s 2017 budget requested $438 million for kidney research—a decrease of $1.1 million dollars from the enacted FY 2016 funding level.

The President’s budget also requests that funds focus on three major kidney disease research initiatives:

  • $3.9 million for Pilot Studies of Candidate Therapies for Pediatric Chronic Kidney Disease: This initiative will establish a multicenter collaboration to perform pilot trials to optimize study designs for larger trials of new pediatric CKD treatments.
  • $3 million for APOL1 Gene Variants in Patients Undergoing Kidney Transplantation: This initiative will support a multicenter study of African-American kidney donors and recipients, including evaluation of APOL1 genotypes and transplant outcomes.
  • $1 million for Beyond Histology—Conquering the Heterogeneity within the Renal Biopsy: This initiative will provide research tools to help identify unique molecular signatures in biopsied kidney tissue to further understanding of the normal diseased kidney.

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Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R. 1130, S. 598)

The American Kidney Fund strongly supports the Chronic Kidney Disease Improvement in Research and Treatment Act of 2015 (H.R. 1130, S. 598).

Introduced in February 2015 by Representatives Tom Marino (R-PA), John Lewis (D-GA) and Peter Roskam (R-IL) in the House and Senators Ben Cardin (D-MD), Mike Crapo (R-ID) and Bill Nelson (D-FL) in the Senate, this legislation would improve the coordination of patient care through a variety of measures. H.R. 1130, S.598 would:

  • Allow individuals under 65 with kidney failure to enroll in Medicare Advantage plans.
  • Expand patient access to kidney disease education programs and home dialysis treatment options.
  • Address kidney disease research, setting the nation on the path toward a cure through efficiently managed and coordinated biomedical research. It would require the GAO to assess the adequacy of federal funding for CKD research relative to the expenditures for CKD care and identify gaps in research.
  • Mandate a federal study to better understand the progression of kidney disease and treatment of kidney failure in minority populations.

There are currently 60 co-sponsors in the House of Representatives, and 10 co-sponsors in the Senate. Continue to urge your elected officials to support this important piece of legislation by visiting our online Action Center.

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

The American Kidney Fund strongly supports The Access to Marketplace Insurance Act (H.R. 3742).

Our HIPP program pays insurance premiums of individuals with kidney failure who need financial assistance. Last year, AKF paid health insurance premiums for more than 79,000 U.S. dialysis patients, with most payments made directly to the insurers—a “third-party” process that keeps patients insured. The 2014 CMS IFR, which requires insures to accept third party payments from state and federal health programs, tribal programs, and the Ryan White HIV/AIDS Program (but does not require them to accept payments from nonprofits like AKF), is jeopardizing the health of thousands of low-income dialysis patients.

Introduced in October 2015 by Representative Kevin Cramer (R-ND), The Access to Marketplace Insurance Act (H.R. 3742) would require insurers participating in the Affordable Care Act (ACA) Marketplaces to accept premium assistance provided by nonprofit charitable organizations. There are currently 40 co-sponsors in the House of Representatives. Urge your elected officials to support this important legislation by visiting our online Action Center.

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Members of Congress Ask CMS to Require Marketplace Insurers to Accept Third-Party Payments from Nonprofit Charitable Organizations

Representatives Doris Matsui (D-CA) and Mike Kelly (R-PA) sent a letter to CMS Acting Administrator Andy Slavitt asking that the final 2017 Notice of Benefits and Payment Parameters include a provision that expands the list of entities from whom insurers are required to accept third-party payments to include nonprofit charitable organizations. The letter asked CMS to consider the role of charitable organization in ensuring access to quality health care for chronically ill patients. Moreover, it addressed the potential lack of quality health care for a vulnerable patient population.

We continue to advocate on behalf of individuals living with kidney disease. AKF Advocates can urge Member of Congress to call Acting Administrator Slavitt by visiting our online Action Center.

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Senate Takes a Different Course of Action on ‘21st Century Cures’ Bill

Senator Lamar Alexander (R-TN), chairman of the Senate Health, Education, Labor and Pensions (HELP) Committee, announced that the Senate will not take up H.R. 6, 21st Century Cures Act, but will mark up a number of individual bills that currently have bipartisan support.

The 21st Century Cures bill was passed by the House of Representative last July. The legislation would create a “Cure Innovation Fund” that would provide temporary, mandatory funding for the NIH and the Food and Drug Administration (FDA). The bill aims to increase targeted investment in biomedical research focusing on breakthroughs and included nearly $10 billion for the NIH over five years. Increased funding for the NIH would help the agency dedicate more resources to medical research, which could lead to new cures and treatments for chronic illnesses like kidney disease.

The Senate HELP Committee has marked up and passed a number of bills, ranging from neurology disease to funding for research and development. The bills are expected to be combined into a single bill after each individual bill has been considered and passed through committee. The one area of continued contention in the Senate is the “mandatory” funding aspect of 21st Century Cures. Members of the Senate want the mandatory funding to be deducted from other areas of the budget. Chairman Alexander is expected to work on this aspect of the bill, as it expected to be resolved before the bill is brought to the Senate floor for consideration.

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