By Kris Robinson

“Improving Quality, Patients Shaping the Future”… that was the topic of the 2004 AAKP Annual Convention. And that is AAKP’s passion as we serve our fellow patients.

Why do kidney patients need their own association? Many people asked that question in 1969 when AAKP was founded with the original name “National Association of Patients on Hemodialysis.” Even today, there are few “pure play” patient groups for other medical conditions – where many organizations are run by professionals.

That’s fine, but AAKP is founded on the belief thatonlywhen kidney patients take charge of their healthcare, can they survive and thrive! And that principle applies not only to our daily medical care, but also to public policies needed to ensure that our dialysis, transplant and all other healthcare is provided to the highest standards.

Life expectancy statistics for end-stage renal disease (ESRD) patients are sobering. According to the 2003 U.S. Renal Data System report, “The poor long-term 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.” For a healthy 20-year-old, life expectancy is around another 58 years – compared to 14 years in dialysis patients. A 50-year-old dialysis patient can expect another six years.

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

At any AAKP Convention, it is quite normal for people to meet patients who have lived 20 and 30 years on dialysis. There are transplant recipients who have had their kidneys for 10 or 20 years and even longer. With the right tools, you can improve your quality of health and life and change the statistics.

By partnering with AAKP, together we can improve the quality of our care. The combined voices of fellow patients – patients determined to lead full and rich lives – are strong and proud.

To be effective consumer advocates, we should be mindful of three priorities: quality, access and affordability.

First –Quality

All patients who require treatment must receive quality care. You and I, just like every other American, expect accountability and quality in any purchase decision ­– and that must include our healthcare services. Isn’t that just commonsense – whether it’s our dialysis treatments, a transplant surgery or a visit with our doctor? The advertising slogan of a top automaker is, “Quality is Job One.” Our lives depend on quality being job one.

It is this strong belief in quality care needed by our healthcare professionals, dialysis facilities, hospitals and everywhere our health is treated that moved AAKP to develop the initiative:

“QUALITY FIRST!” (Registered Convention attendees received buttons with this logo.)

Second –Access

Every patient has a right to know about each treatment option. No patient should have to travel long hours to receive dialysis. Every patient who chooses a kidney transplant should have the opportunity to receive one. Every patient who wants to take dialysis home should have this option. Access means you, with your physician, are making decisions about your treatment, once all options are made available to you – not insurance companies, formularies or providers – but YOU.

Access to needed services also means private health insurers and government health programs, like Medicare, provide adequate reimbursement to providers such as physicians, nurses, hospitals and dialysis clinics. No dialysis facility should lose money because Medicare rates aren’t sufficient.

Third – Affordability

As kidney patients, we must know how much healthcare affects our pocketbooks. Whether it’s the cost of medications we purchase, the dialysis services we receive or the transplant surgery we have, cost and affordability – just like for every other consumer good – is terribly important.

Thirty-five years ago, 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 and “death” committees rationed care.

Among AAKP’s most memorable moments was 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.

In spring 1973, AAKP announced “a new role in kidney healthcare delivery.” I quote: “We must be the consumer advocate and take a responsible position to ensure the following: all patients who require treatment receive QUALITY care; and the patient and his physician make a joint determination on the type of treatment best suited to the patient.”

In AAKP’s view, that message is as fresh today as 31 years ago. “Quality First” is not just a slogan, it is a way of life.

Only patients can be the ones to ask for quality in our healthcare. We are the recipient of the care we receive. Shouldn’t we ask – no, demand – that quality outcomes in our care be number one? When we talk to policymakers this year, quality of care will be our top agenda item – make it yours. Please join with us, encourage fellow patients to join with us and let us speak with one strong, proud voice.

Kris Robinson is the Executive Director for AAKP.

This article originally appeared in the November 2004 issue of aakpRENALIFE, Vol. 20, No. 3.

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