“Quality is Job 1” is the well-known advertising slogan of a top automobile manufacturer. In the health space, public and private healthcare payors are taking a hard, new look at quality. For example, in the Medicare Modernization Act (“MMA”), Congress mandated hospitals report quality data to Medicare to receive a full inflation update. Senate Finance Chairman Senator Chuck Grassley (R-IA) introduced legislation to strip the venerable Joint Commission on Accreditation of Healthcare Organizations of its unique authority to accredit hospitals for Medicare, following GAO findings that JCHAO surveys missed significant deficiencies.

The takeaway? Healthcare quality is now, more than ever, a political imperative!

The kidney community can take some pride in its quality commitment. For example, over a decade ago, concerned about patient mortality, Medicare, working with the kidney community, identified core indicators to measure dialysis quality, including adequacy and anemia management. Since then, according to a recent survey paper, the percent of dialysis patients meeting the adequacy standard has nearly doubled, to 82 percent, with similar impressive results for anemia management. In 2001, Medicare established “Dialysis Facility Compare” website (www.medicare.gov), and posts online these two quality indicators – and patient survival – by facility to help kidney patients make informed choices in selecting a clinic.

But the news is not all good. Other clinical issues linked to patient well-being, such as nutrition; AV fistula use; infection and inflammation; and treatment of co-morbid conditions, such as cardiovascular disease, have significant opportunities to improve.

Indeed, life expectancy statistics are sobering. According to the U.S. Renal Data System’s 2003 report, “The poor longterm survival of ESRD patients continues to be an area of concern. Expected remaining lifetimes for dialysis patients are only one-third to one-sixth those of the general U.S. population.” Someone starting dialysis at age 20 can expect another 14 years (on average) – versus 58 for 20-year olds generally! For a 50-year old person, life expectancy is six years – versus 30 for others.

But there are long-term survivors on dialysis. In recent years, AAKP’s mission has focused on patient education, believing passionately that only a patient who takes charge of his or her healthcare can survive – and thrive. AAKP is an organization of survivors – with many of our members beating the odds – sometimes living 20 and 30 years on dialysis.

Having once been in the healthcare quality vanguard, where is the kidney community today? Perhaps the fair answer is: struggling with new expectations from Congress and Medicare – with clear signs of impatience from both. In MMA, Congress revamped the dialysis payment system to take the “profit” from ESRD drugs – reflecting its belief that financial incentives drove ESRD drug usage; accelerated momentum on “bundling” ESRD drugs and lab services into the composite rate; and provided dialysis payments a modest, one-year inflation update of 1.6 percent, although the Medicare Payment Advisory Commission (“MedPAC”) recommended larger increases.

We were not surprised. As early as May 2003, we shared our view that Congress would pass Medicare legislation, with ESRD drug payment reform and dialysis quality high priorities – views we often found dismissed. AAKP heard from Congressional staff that a lack of alternative proposals forced Congress to act unilaterally, also an important factor in limiting updates. Early in 2003, AAKP entered briefly into discussions with one dialysis provider to craft a proposal linking dialysis updates to quality – we believed Congress might even be satisfied with a study.

In our view, there were other missed opportunities in MMA. With Congress poised to spend $18 billion to improveMedicare payments for rural health, AAKP shopped a “costplus” reimbursement proposal for “critical access” rural and inner city dialysis clinics. Again, no takers.

Medicare has been equally short with our community. Last year, Medicare ripped up the longstanding monthly capitated payment (MCP) for nephrologists; payment is now based on monthly patient encounters. Another unilateral action, with the kidney community scrambling to respond.

Congress is now sending a clear message about new intentions for the Medicare ESRD program – including tying dialysis payments to quality. In June, Senator Max Baucus, the senior Democrat on the Senate Finance Committee, introduced S. 2562, the “Medicare Quality Improvement Act of 2004”, based on MedPAC proposals. Other members of Congress are also preparing ESRD “quality” bills.

AAKP welcomes Congress and Medicare’s “pay for performance” agenda. AAKP’s longstanding position is we support dialysis payment increases – and other reimbursement increases – when tied to quality improvement. As AAKP’s former President, I am sometimes frustrated to hear or read that AAKP does not support payment increases. That’s simply not true! Our members – just like every other American – expect accountability and quality in any purchase decisions, including their healthcare services – to receive value for their money. Isn’t that just commonsense? In fact, we wonder how often do dialysis providers market their clinics on quality?

To those who say healthcare services to kidney patients are just fine, to paraphrase Robert Nardelli, the CEO of Home Depot: Here’s my simple belief. There is an infinite capacity to improve the healthcare of kidney patients. There is simplyno way we are doing the best job possible.

Where do we go from here—how can the kidney community retake the initiative on public policy? And let’s be clear – if we don’t, Congress and Medicare have more surprises ready to roll out. We have a great story to tell in Washington – dialysis and transplantation are a miracle – but three things would help: good ideas, budget savings and momentum.

To supply ideas and momentum, in October 2003 AAKP wrote to Tommy Thompson, Secretary of U.S. Department of Health and Human Services, proposing a “National Commission on Kidney Patient Outcomes.” Let’s just say HHS needs more encouragement to make this happen. AAKP’s agenda includes the rush to bundling, CKD and chronic disease management, the new prescription drug benefit, how to advance new technology and biomedicalsolutions, transplantation, dialysis and other healthcare reimbursement, and patient education.

Let’s consider where the Congressional Budget Office might score ESRD program savings – savings for reinvestment in services to kidney patients. Here are two ideas worth $43 billion over 10 years: First, can we reduce the $22 billion spent annually on hospital care by just 15 percent? That yields over $33 billion! And if the 50,000 patients awaiting transplant receive a kidney, our rough calculations suggest another $10 billion.

When AAKP was founded, our members were public policy “radicals” – lobbying Congress for any program to pay for dialysis – to allow us to live. Private insurance coverage was limited – hospitals often provided dialysis as charity, where “death” committees rationed care. Among AAKP’s most memorable moments, in November 1971 AAKP’s Vice President, Shep Glazer, was dialyzed LIVE before the House Ways & Means Committee! Before Shep entered the hearing room, he told reporters, “Gentlemen, I am going to tell the Committee that if dialysis can be performed on the floor of the Congress, it can be performed anywhere. Kidney patients do not have to be confined to hospitals. I want to show the Committee what dialysis is really like. I want them to remember us.” And Congress did. A year later – in September 1972 – Congress passed the special Medicare ESRD entitlement.

The next Spring, AAKP announced “a new role in kidney healthcare delivery. We must be the consumer advocate and take a responsible position to insure the following: #1, all patients who require treatment receive QUALITY care; and #2, the patient and his physician make a joint determination on the type of treatment best suited to the patient.”

That message is as fresh today as 35 years ago. We believe the public policy risks and opportunities have never been greater – and we will step up.

Brenda Dyson is the Studies & Patient Services Coordinator for ESRD Network 8, Inc. Brenda is a transplant recipient and in the past has experienced home hemodialysis, daily dialysis and incenter hemodialysis. Brenda is the Immediate Past President of AAKP.