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American Kidney Fund 2014 Policy Priorities

Chronic kidney disease affects as many as 31 million Americans, with millions more at risk. The American Kidney Fund advocates for policies that provide access to health care and improve the quality of care for individuals with kidney disease.  In 2014, we are focused on the following issues:

Policy Priority 1: Implementation of Affordable Care Act

The purpose of the Affordable Care Act is to ensure that all Americans have access to affordable health insurance. Signed into law by President Obama in 2010, the ACA takes full effect in 2014. 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.

Having health insurance coverage is a critical component of treating chronic kidney disease. We are pleased that the Health Insurance Marketplace, which is a key component of the ACA, offers health coverage to people living with chronic kidney disease who previously may not have been able to obtain or afford coverage.

People living with chronic kidney disease and kidney failure face particular health concerns and challenges. AKF is working to ensure that this population has access to the same benefits and subsidies available to others under the ACA. We are tracking numerous issues relating to implementation of the ACA.

  • Monitoring Marketplace enrollment: The initial rollout of the Marketplace enrollment was problematic, with numerous glitches befalling the online enrollment process. We will be carefully monitoring this issue throughout 2014 to assess how our constituents are faring with Marketplace enrollment.
  • Advocating for appropriate ESRD treatment options under state Marketplace plans: The Department of Health and Human Services has provided states with guidance on the benefits that must be covered in a state-administered Marketplace plan. Treatment for kidney failure (also known as end-stage renal disease, or ESRD) is not specifically listed as an essential health benefit. At the same time, it is also not expressly excluded. We are concerned that this could cause confusion and misinterpretation in some states. Another concern with state Marketplace health plans is that some state plans are requiring transplant waiting periods, ranging anywhere from six to 24 months. Federal law allows a 90-day waiting period for transplantation. We believe that a waiting period beyond what federal law permits is a roadblock and prevents access to transplantation. We continue to urge HHS to provide the states with specific language on ESRD coverage. We also encourage individuals to compare plans during the enrollment process to evaluate the specific health care benefits each plan offers.  We are monitoring state plans to ensure that individuals on dialysis will have access to appropriate treatment options in each state-administered plan. 
  • Monitoring impact of Medicaid expansion: The ACA seeks to reduce the number of uninsured individuals through the expansion of Medicaid. Twenty-five states and the District of Columbia have decided to move forward with expansion. Expansion will provide low-income individuals in those states with much-needed access to healthcare; however, expansion of Medicaid also raises some concerns about longer term provider and delivery system capacity, which could adversely affect access to high-quality care for dialysis patients. AKF will continue to monitor Medicaid expansion as well as patient access issues throughout 2014.
  • Advocating for premium subsidies for dialysis patients: Individuals with incomes up to 400 percent of the federal poverty level are eligible for subsidies toward the purchase of private insurance plans in the Marketplaces; however, people who are eligible for coverage under a federal health program such as Medicare are ineligible for these subsidies. Under longstanding federal law, most dialysis patients, regardless of age, become eligible for Medicare coverage after three months of dialysis treatment, but may retain private insurance as their primary insurer for 30 months before Medicare takes over as primary insurer. We are concerned that the ACA prohibition on premium subsidies for persons eligible for federal programs will mean that dialysis patients who wish to retain private insurance will not have access to plans in the Marketplaces. AKF will continue to advocate that dialysis patients are eligible for premium subsidies. 
  • Ensuring 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 moving forward, to ensure that individuals with kidney disease have access to provider care and treatment options within a reasonable distance.

Policy Priority 2: Protecting Access to the Medicare ESRD Program

In 1972, Congress passed a law that provides Medicare coverage to most people with kidney failure, regardless of age. The Medicare ESRD program ensures that people with kidney failure can receive treatment through dialysis and transplantation.  AKF is currently monitoring three issues relating to the Medicare ESRD program.

Monitoring cuts to ESRD program: Since 2011, the Medicare ESRD program has undergone a series of significant payment reforms and reductions. The most recent cut occurred at the end of 2013 when the Centers for Medicare & Medicaid Services (CMS) released a rule that will result in a 12 percent cut in Medicare dialysis payments over the next several years. We are strongly advocating that ESRD program payment reductions be implemented in a way that does not impact care, and we will advocate strongly against additional cuts.

Advocating for extended access to private coverage (extending Medicare Secondary Payer):  For individuals who are entitled to Medicare based on having ESRD, Medicare is the secondary payer to group health plans for the first 30 months of ESRD treatment. After 30 months, Medicare automatically becomes the primary insurer for these individuals. Yet for many patients, private health insurance coverage provides a more extensive benefit package and lower out-of-pocket costs than does Medicare. In addition, other Medicare beneficiaries have the option of continuing their private insurance as primary insurer for as long as they choose. As a matter of equity, ESRD patients should be given the option of continuing private coverage beyond 30 months if they choose. AKF supports proposals to extend private coverage for ESRD patients for an additional 12 months. Doing so would not only provide individuals with the benefits of private insurance for a longer period of time; it would provide cost savings to the government.

Supporting lifetime coverage of immunosuppressive drugs: A kidney transplant is often the treatment option with the best outcomes for patients. Patients who receive a kidney transplant must take immunosuppressive drugs for the life of their kidney transplant. However, Medicare will only pay for these anti-rejection drugs for the first 36 months after a patient receives their transplant. AKF supports legislation in the House (H.R 1420), and in the Senate (S.323) that would provide lifetime Medicare coverage of immunosuppressive medications.  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.

Providing lifetime coverage for these medications would also result in substantial cost savings to Medicare because it would reduce the number of patients who must return to dialysis. The cost of immunosuppressive medications is between $12,000 and $19,000 per year. Patients who stop taking immunosuppressive drugs because they can’t afford them face the loss of their transplanted kidney, necessitating a return to dialysis treatment. The cost to Medicare is nearly $80,000 per dialysis patient annually.

Policy Priority 3: 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 will continue to advocate that the performance standards in the QIP are clear and measurable. In particular, we are concerned about the lack of a clear minimum standard of anemia management in the QIP. We will continue to monitor this issue and to support changes that would provide greater patient protections.

Policy Priority 4: Supporting Federal Funding For CKD Research

Many people develop chronic kidney disease (CKD) as a result of hereditary or congenital conditions.  However, in two-thirds of cases, CKD is caused either by diabetes or high blood pressure. As many as 31 million Americans have CKD, but most don’t know it because of its silent nature in the early stages. Research is critical to preventing kidney disease and improving treatment options for those affected.

As Congress continues to address funding and budgetary constraints across government agencies, we urge a thoughtful, balanced approach, taking into account the important work that the National Institutes of Health (NIH) is doing to address CKD. More individuals are affected by CKD than by cancer or heart disease, and CKD is underfunded compared to the research dollars invested in these and other diseases. It is critical that research dollars allocated to CKD begin to correlate with the widespread impact of CKD on our nation’s health. In 2013, NIH research funding for CKD was $591 million. In contrast, NIH funding for cancer was $7.8 billion and for heart disease was $1.6 billion.

A greater investment in CKD research is necessary. AKF urges Congress to increase NIH funding for CKD research.

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