By R. Alexander Vachon, III, PhD

The “Advocacy & Public Policy” section of AAKP’s Web site recently received a makeover to provide tools and information allowing patients to become informed advocates. Let us take a quick tour of the new content and features. Go to www.aakp.org/ AAKP/advocacy.htm to get started.

Orientation

This section expresses AAKP’s philosophy on patient advocacy, describes Web site features and posts a useful article about advocacy. Our philosophy on public policy and advocacy can be summarized in a few, short sentences:

First, why is public policy important to kidney patients? Because OUR LIVES depend on it. Decisions made by the Federal and State governments can be very important to kidney patients. Here is the proof: Where would dialysis patients be today without Medicare? Before Congress passed a law in 1972 that automatically qualified end-stage renal disease (ESRD) patients for Medicare, dialysis access was limited for most patients. Today, we ask how public policy can be used to improve healthcare for kidney patients. Second, the “patient voice” in Washington, D.C., has unique credibility. If patients do not speak for themselves and for their needs, who will? Third, AAKP believes informed patients are the best advocates. Why? Patients need facts to effectively communicate with policymakers. Patients do best when they tell their own story.

Perhaps these points are best illustrated with an example of badly done patient advocacy. When I worked in the U.S. Senate, I recall an occasion when we received multiple letters from Medicare beneficiaries complaining that a proposed payment cut for an item of durable medical equipment would mean companies would no longer be able to provide equipment to patients. Most of the letters, signed by patients, were identical because the letterform was written and distributed by a company. However, those complaints were not accurate. In fact, studies showed Medicare was overpaying for equipment. By reducing price, cost to patients would be lower. I called patients who sent letters and learned they had no idea what was in the letter they signed. That kind of “campaign” can give a whole industry a black eye.

This section also describes alerts on AAKP’s homepage. A “Green Box” indicates important policy information for patients and families. A “Red Box” is a call for action and indicates AAKP needs your help with a public policy issue.

Finally, this page contains my article, titled "Our Voices Make a Difference: Why, Who, How, What of Influencing Public Policy," from the November 2004 issue of aakpRENALIFE. This article is a short introduction to the whys and hows of advocacy and public policy for patients.

Contact Your Members of Congress

Make YOUR voice heard. Click on this section for information on how to find your members of Congress, as well as suggestions for letters you may send to let them know Federal programs for kidney disease are important to you. Remember, by telling YOUR story you “make real” the importance of these programs.

AAKP Policy Publications

Click on this header to find articles and other publications by AAKP on public policy and advocacy. This page includes past “Washington Report” columns, as well as AAKP’s policy press releases and articles.

Public Comments & Correspondence

Click here to read letters sent by AAKP to government officials and other policymakers about issues affecting kidney patients. Our government is highly responsive to its citizens and often invites individuals and organizations to comment on proposals. If kidney patients do not tell Congress and Federal programs like Medicare about their needs, who will? There is perhaps no public policy issue more important to patients right now than the new Medicare drug benefit. AAKP has recommended kidney patients have an “open formulary,” which means physicians have no restrictions on drugs they may prescribe. Kidney patients typically receive many drugs, which increases the risk of adverse interactions. Some medications can cause additional kidney damage, and individual response to transplant drugs can be critical in keeping an organ.

Government Reports & Documents

Congress and Federal agencies publish reports that describe Federal programs for kidney patients, how well programs work and what can be done to improve them. This section is one of the few places, perhaps the only place, where kidney patients can easily find these important government documents. AAKP helps provide the facts and you decide.

Effective Public Policy Advocacy

Mark this section as a “coming attraction” to be discussed in a future issue of aakpRENALIFE.

As always, check www.aakp.org for breaking news and the latest public policy developments, and look for the RED and GREEN boxes.

This article originally appeared in the March 2005 issue of aakpRENALIFE, Vol. 20, No. 5.

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