Advocacy is about changing the world. For kidney patients, that might include Medicare laws to cover more needed services or how dialysis facilities operate, or even people’s attitudes. Changing the world begins with good ideas – and often by being “unreasonable.” As the British playwright George Bernard Shaw observed, “Reasonable people adapt themselves to the world. Unreasonable people attempt to adapt the world to themselves. All progress, therefore, depends on unreasonable people.”

I was reminded of these simple principles in a recent, powerful editorial in the Journal of Vascular Access, entitled “Fistula Culture and No-Excuses Nephrology,” by Rita McGill, MD, of Allegheny General Hospital in Pittsburgh.

Dr. McGill begins her article, “Arteriovenous fistulas are the most efficient, reliable, and least risky method of vascular access for chronic hemodialysis. No real debate remains on this point.” While AV fistula rates are more than 60 percent in Europe and Canada, less than 30 percent of ESRD patients in the U.S. have fistulas.

Without additional resources and among “high- risk” patients, Dr. McGill and her colleagues increased fistulas from 30 to 75 percent over five years. The benefits? A 40 percent drop in infections and a lower death rate.

How was this accomplished? By being “unreasonable” about barriers, including patient education to address fistula anxieties and changing “business as usual” among health care professionals. And always demanding the best:

Promoting a culture of fistula access in an institutional setting sometimes required considerable resolve. We noted a significant drop in the quality of vascular access surgery after the departure of a skilled surgical team, and referred our access work to another hospital for several months, despite intense administrative pressure to keep surgical referrals “in-house.” Refusal to accept suboptimal outcomes ultimately led to the acquisition of another excellent surgical team. Many nephrologists face subtle or overt pressures to limit their referral options. Choice of access surgeon must be driven by outcome, and be independent of economics or local politics. (“Fistula Culture and No-Excuses Nephrology,” p. 63)

Dr. McGill’s editorial is available online by clicking here.

Two other “unreasonable” people are Senators Chuck Grassley and Max Baucus. Sen. Grassley is Chairman of the Senate Finance Committee and an Iowa Republican; Sen. Baucus is the top Democrat on Senate Finance and hails from Montana.

On June 30, Senators Grassley and Baucus introduced a bill, S. 1356, the “Medicare Value Purchasing Act of 2005.” This bill is pretty simple. The Medicare program would contract with a “quality organization” to establish quality and outcomes standards for health care facilities, including dialysis clinics. This organization would work with all stakeholders – including patients. The Medicare program would review proposed standards and publish them for public comment prior to adoption. Any facility not meeting the standards would lose 1 to 2 percent of their reimbursement.

AAKP endorsed the Grassley-Baucus bill – AAKP is one of 29 groups supporting the bill, but so far is the only one in the kidney community.

As AAKP President Brenda Dyson stated, “For more than 35 years, AAKP has been a ‘consumer advocate’ for the nation’s kidney patients – fighting for quality, access, and affordability of medical care for our fellow patients.

“AAKP believes the Grassley-Baucus bill is a new chapter in American health care – demanding that the nation’s single largest payer of health care, the Medicare program, obtain proven value – and better quality – for each dollar.

“But better quality can cost more money and is certainly not free. We believe Congress needs to improve payments to dialysis facilities – and we are especially concerned about rural and inner city facilities.”

Read AAKP’s letter of support by clicking here. Bill text and other materials are available by clicking here.

What is the kidney community’s response to the Grassley-Baucus quality bill? I’ve heard support, but also statements, such as “We have two measures of dialysis quality [dialysis adequacy and anemia management] – do we need more? We can’t have better quality without more money. Quality is an issue that needs more study. Sure, patients could benefit from better care, but it’s not our job – it’s the job of physicians.”    

Incidentally, in March 2003, AAKP awarded Sen. Grassley its Congressional Leadership Medal to recognize his efforts to improve kidney patient care.

Perhaps we need more “unreasonable” people in the kidney community. Last year, I had breakfast with a prominent nephrologist and asked why we can’t set goals in the kidney community – for example, reduce the death rate? He smiled, and as I recall he replied, “You know, I’ve thought for a long time we should set goals – like reduce mortality by ten percent. But don’t let my people know I’m thinking like that or it could get me in trouble.” But I got the distinct impression that with a little encouragement this colleague could be quite “unreasonable.”

Indeed, there are surely other proven, unimplemented ideas to improve the health and well-being of kidney patients. Last year, AAKP called for the very unreasonable idea of a “National Commission to Improve Patient Outcomes,” which AAKP President Brenda Dyson described in an article, entitled “The quality imperative: Why the kidney community must take charge.” Read her article online. Click here.

AAKP has a vigorous program of patient advocacy. We’re always looking for “unreasonable” people among our members and other kidney patients to work together on projects to change government laws and regulations to improve care for kidney patients. Check out the Advocacy and Public Policy section of the AAKP Web site (www.aakp.org)!

This article originally appeared in the September 2005 issue of aakpRENALIFE, Vol. 21, No. 2.

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