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American Kidney Fund 2015 Policy Agenda

Thirty-one million Americans are living with chronic kidney disease, including more than 636,000 individuals who have kidney failure and rely on dialysis or transplantation to survive. As the nation’s largest not-for-profit organization serving people with, and at-risk for, kidney disease, the American Kidney Fund is a strong and independent voice advocating for policies that improve access to health care and that strengthen quality of care for individuals with kidney disease. We work with Congress, the Administration, federal agencies, and state governments to advance our legislative and regulatory policy agenda.

Legislative Policy Agenda

The 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, including allowing individuals under 65 with kidney failure to enroll in Medicare Advantage plans. It would also expand patient access to kidney disease education programs and home dialysis treatment options. The legislation would address kidney disease research, setting the nation on the path toward a cure through efficiently managed and coordinated biomedical research. The legislation 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. The legislation also mandates a federal study to better understand the progression of kidney disease and treatment of kidney failure in minority populations.

Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients

Most recently introduced in the last Congress, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would provide lifetime immunosuppressive drug coverage for kidney transplant patients under Medicare Part B. Kidney transplant patients would be eligible to remain in the Medicare Part B program solely for the purpose of receiving these critical medications.

Immunosuppressive drugs prevent transplanted organs from being rejected. Medicare currently provides 36 months of coverage for immunosuppressive drugs for non-disabled kidney transplant patients under the age of 65. Patients who are living with a kidney transplant have better health outcomes, generally enjoy a higher quality of life and are more often able to retain employment. Patients who stop taking immunosuppressive drugs because they can’t afford them face the loss of their transplanted kidney, necessitating a return to dialysis. Providing lifetime coverage for these medications would result in better health outcomes for patients, as well as substantial cost savings to Medicare because fewer transplant patients would need to resume dialysis.
AKF strongly supports re-introduction and passage of this legislation.

Regulatory Policy Agenda

Monitoring impact of the Affordable Care Act on kidney patients

The purpose of the Affordable Care Act (ACA) is to ensure that all Americans have access to affordable health insurance. This law is intended to break down barriers to obtaining health coverage. It bars health plans from denying coverage because of pre-existing conditions, and prohibits insurers from dropping people from plans when they become ill. Health insurance coverage is critically important to people with kidney failure, also known as end-stage renal disease (ESRD). Although most Americans with kidney failure become eligible for Medicare, this coverage does not begin until three months after kidney failure diagnosis. Additionally, some individuals with ESRD are not eligible for Medicare due to insufficient work credits. For these patients, the health insurance Marketplace may provide coverage they could not otherwise obtain.

AKF is monitoring the patient experience within the changing health insurance landscape and is tracking several issues in particular:

  • Third-party premium payments: Through AKF’s Health Insurance Premium Program, we help more than 71,000 low-income dialysis patients annually to maintain insurance coverage. We submit most of our grants directly to insurance companies, a “third-party payment” process that ensures patients do not lose coverage due to late or non-payment. We are urging the Department of Health and Human Services to clarify guidance HHS issued in 2014 around third-party payments for Marketplace plans. We are urging HHS to name charitable organizations as entities from which insurers must accept third-party payments for Marketplace plans. This clarification will ensure that we are able to continue assisting patients with their health insurance premiums in the most effective and efficient way possible.
  • ESRD treatment options under Marketplace plans: The Department of Health and Human Services in 2013 issued a final rule on the “essential health benefits” that must be covered in Marketplace plans. Treatment for kidney failure is not included in the list of essential health benefits, but it is also not specifically excluded. AKF had urged HHS to provide specific language on ESRD coverage so that individuals with kidney failure would be sure to have access to appropriate treatment options in each Marketplace plan. With the final rule in place, we encourage individuals to compare plans during the enrollment process to evaluate the specific health care benefits each plan offers. 
  • Impact of Medicaid expansion: The ACA significantly expanded Medicaid, providing millions more Americans with access to health care. As Medicaid continues to undergo this transformation, its expansion raises some concerns about longer-term provider and delivery system capacity, which could adversely affect access to high-quality care for dialysis patients. AKF continues to monitor the impact of Medicaid expansion.
  • Network adequacy: The ACA calls for health plans in the Marketplaces to meet standards for network adequacy. There is concern that as more individuals enter the private insurance market, there might not be enough providers in a network area to ensure that beneficiaries have access to care within specific “time and distance” requirements. AKF will monitor issues of network adequacy, to ensure that individuals with kidney failure have access to provider care and treatment options within a reasonable distance—a critically important factor for patients who rely on dialysis three times weekly to survive.

Ensuring patient protections in ESRD Quality Incentive Program

The Medicare Improvements for Patients and Providers Act of 2008 created a Quality Incentive Program (QIP) for Medicare’s ESRD program. The QIP, which took effect in 2012, is intended to promote high-quality services in outpatient dialysis care. The QIP links a portion of facilities’ Medicare reimbursement directly to the quality of care patients receive. For those facilities that do not meet or exceed certain standards, the QIP establishes payment reductions. AKF supports the QIP because of its intent to ensure high-quality patient care. We continue to advocate that the performance standards in the QIP are clear and measurable and provide the best patient protections. 

Tracking impact of CMS five-star rating system for dialysis facilities

It is critically important for dialysis patients to trust that the centers where they have life-sustaining treatment are facilities that provide high-quality care. Patients need a reliable and objective way to compare the quality of dialysis centers so they may make informed decisions about where to receive care. AKF believes that five-star rating system that the Centers for Medicare and Medicaid Services (CMS) has recently added to its Dialysis Facility Compare website will result in patient confusion. The system provides a rating of one to five stars to a dialysis facility based on nine quality measures. The system unfairly categorizes many facilities as low-performers, in large part because the system ranks all dialysis facilities on a bell curve, a methodology forcing some facilities into the lowest 1- or 2- star ratings even when these facilities may, in reality, provide excellent care. AKF will monitor patient responses to the five-star rating system, and will work with other organizations in the renal community to continue communicating concerns and recommendations for improvement to CMS.

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