The Medicare End Stage Renal Disease (ESRD) Program is a national health insurance program of the Centers for Medicare and Medicaid Services (CMS). According to the CMS Web site the program is "designed to encourage self-care dialysis and kidney transplantation and clarify reimbursement procedures to achieve effective cost control" (http://www.cms.hhs.gov/esrdgeneralinformation). But the costs of care are enormous. In 2002 the program covered less than 1% of all Medicare beneficiaries but accounted for nearly 7% of total Medicare expenditures.1 And according to the United States Renal Data System, patients with chronic kidney disease and end-stage renal disease "consume 23.7% of Medicare expenditures, making kidney disease an important issue for public policy considerations."2

Problems with payment. The number of patients requiring dialysis or transplantation increased from 44,408 in 1978 to more than 472,000 in 2004.2, 3 Medicare costs for the ESRD Program have grown from $229 million in 1974 to $18.5 billion in 2004.4 Xue and colleagues predict that the number of patients on dialysis will swell to more than 520,240 by 2010, and the total annual cost of the program is expected to be $28 billion.5

Under interim regulations of the Social Security Amendment of 1972, reimbursement for outpatient dialysis was limited to $138 per treatment.1 In 1983 fallout from the creation of Medicare diagnosis-related groups (groupings of diagnoses designed to simplify reimbursement) decreased the reimbursement rate to less than $130.1 In March 2006, the average composite rate (the allowable Medicare payment) for hospital-based dialysis ranged between $128 and $132.6

Payment remains low because the ESRD Program is the only Medicare program that relies upon Congressional legislation for rate adjustments. There is no automatic adjustment to offset inflation and the rising costs of health care. As a result, the Medicare reimbursement for dialysis has seen a 6.8% increase between 1990 and 2006, while the U.S. Consumer Price Index reports that the costs of medical services have risen by 107%.7

A need for change. In 2004 Medicare covered 309,300 patients on dialysis-almost 93% of all patients with end-stage renal disease.6 The remainder are covered by Medicaid or private payors. As a result, members of Congress and policymakers at the CMS hold the power when it comes to reimbursement.

Because most funding for care comes through public financing, the 12,000-member American Nephrology Nurses' Association (ANNA) decided to work to influence legislators and policymakers on behalf of patients with end-stage renal disease.

SPRINGING INTO ACTION

In 2003 the ANNA pilot tested a grassroots advocacy initiative designed to help members educate state and federal lawmakers on end-stage renal disease. The initiative grew out of the ANNA's stated values of advocacy, scholarship, and excellence (see http://www.annanurse.org).

The two-part program consisted first of an invitation to lawmakers to tour a dialysis facility in their districts. We hoped that by meeting with patients undergoing dialysis and staff, legislators would better understand the challenges posed by Medicare and Medicaid reimbursement.

The second part was a 16-page reference, ESRD Briefing Book for State and Federal Policymakers, designed to give lawmakers an overview of end-stage renal disease (to view or obtain the briefing book, go to http://www.annanurse.org and click on "ESRD Education Week," under "Health Policy"). This was the birth of the "ESRD Education Day" initiative.

A step-by-step planning-and-orientation guide was developed and posted along with the briefing book on the ANNA Web site. The site allows ANNA members to identify federal and state lawmakers to invite and provides a list of Congressional members on the three committees that oversee Medicare and Medicaid funding: the Senate Finance, House Ways and Means, and House Energy and Commerce. It includes a timeline for planning a tour, a sample invitation, talking points, and a sample press release. The ANNA distributes national press releases to more than 350 media outlets, such as Nursing Spectrum, the Renal Physicians Association, and the National Renal Administrators Association.

As a result, in 2003 62 lawmakers or their aides in 29 states toured 83 dialysis facilities. Consequently, the ANNA's board of directors approved resources for an annual event. Starting in 2005, the ESRD Education Day was renamed the ESRD Education Week (EEW).

OUTCOME

In four years, we have educated more than 350 federal and state lawmakers, Medicare officials, and others. ANNA members have secured federal support for proposed legislation such as the Kidney Care Quality and Improvement Act of 2005 (HR 1298; S 635). Currently, every increase in the composite reimbursement rate must be awarded through an act of Congress; therefore, both versions of the bill provided for an automatic update. In addition, the legislation called for an increase in funding for patient education, a demonstration project that would establish an outcome-based reimbursement process, and other quality-improvement measures. Although this legislation expired at the end of the 109th Congress, ANNA members were excited to learn that a separate bill was passed, the Tax Relief and Health Care Act of 2006 (HR 6111, passed by both houses of Congress), which authorizes a 1.6% increase in the composite rate and mandates a study to assess access to home dialysis. But it doesn't provide for automatic annual updates to the composite rate.

On February 27 new legislation, the Kidney Care Quality and Education Act of 2007 (S 691, HR 1193), was introduced in Congress. It scales back the request for a 10-year update to the composite rate, calling instead for a three-year payment update formula linked to improvements in the quality of care or the attainment of quality benchmarks as established through the Continuous Quality Improvement Initiative. It continues to emphasize patient education and the quality of care, including programs to educate Medicare beneficiaries with stage IV chronic kidney disease on their condition and how to prolong the onset of kidney failure.

COLLABORATING PARTNERS

Since 2003 the ANNA's collaborations have included work with Kidney Care Partners (KCP), a coalition of 24 nephrology stakeholders. Members of KCP, such as the National Renal Administrators Association, the Renal Physicians Association, the National Kidney Foundation, and Amgen, have worked with the ANNA to promote the EEW initiative.

Other collaborations include work with patient advocacy groups such as DaVita Patient Citizens and the Wellness and Education Kidney Advocacy Network that have encouraged their members to participate in EEW. Large dialysis organizations also have been supportive of the EEW initiative.

One of the ANNA's proudest moments came in 2005 when the American Society of Association Executives named the EEW initiative to the Associations Advance America Honor Roll. This national competition showcases innovative projects in areas such as education and business.

The ANNA encourages all nursing organizations to commit resources to developing members who are patient advocates as well as political and legislative advocates. Our patients are depending on us.

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