Many people and organizations in the kidney disease community – doctors and other health professionals, as well as enterprises such as dialysis clinics and pharmaceutical manufacturers – have a stake in public policy. But, without a doubt, kidney patients and their families have the biggest interest. Why is that?

Let’s define “public policy.” In practical terms, public policy is the programs created by Congress that serve kidney patients, and the rules and regulations written by Federal government agencies to operate those programs.

There is perhaps no single program that affects the lives of kidney patients more than Medicare. Medicare (www.Medicare.gov ) is, of course, the Federal health insurance program for 41 million aged or disabled Americans. But in 1972, Congress passed a special entitlement to Medicare solely because of end-stage renal disease (ESRD). AAKP’s role in passing that special entitlement is a great illustration of the power that the kidney “patient voice” has in Congress.

Founded 35 years ago, AAKP’s first members were public policy “radicals” – looking for any way to pay for dialysis. One of AAKP’s most memorable moments was in the fall of 1971, when AAKP’s vice president, Shep Glazer, was dialyzed “live” before the House Ways & Means Committee. This memorable moment had an incredible impact on Congress. A year later, in September 1972, Congress passed the special Medicare ESRD entitlement. Medicare is a miracle to kidney patients. Today, 90 percent of ESRD patients have Medicare. Where would ESRD patients be today without Medicare?

But let me suggest that patients have a RESPONSIBILITY to help shape public policy. Congress and Federal officials are often not experts on the needs of kidney patients or kidney disease – you are! And if you do not tell them, who will?

Making your voice heard in Congress is your Constitutional right! The First Amendment of the Bill of Rights of the United States Constitution, which was added in 1791, includes phrase, “Congress shall make no law respecting … the right of the people … to petition the government for a redress of grievances.” To translate quaint 18 th century English into modern English, Congress shall pass no law that limits the right of the “people,” that’s you and I, to ask the government to fix any complaint we have with it. Let’s recap: WHY is public policy important to kidney patients? Because kidney patients’ lives depend on it!

But can kidney patients really make a difference in the laws that Congress passes, or the ways Federal agencies operate? Absolutely! In my view, too often television and other media give a cartoon image of Washington, D.C. as a place where big campaign donations and “fat cat” lobbyists dominate the legislative process. I have worked in Congress, and that is not the place I have seen. Senators, Representatives and their staffs – often overworked – get into the business of government usually because of a sincere interest in people. And the people they are most interested in are their constituents back home. The late Speaker of the House Tip O’Neill had a famous expression, “All politics is local.” What Tip meant was, to a member of Congress, constituent concerns count first – regardless of party label.

There are three keys to having impact in Washington, D.C. – WHO, HOW and WHAT. WHO are the decision makers we want to reach? HOW can patients make our voices heard? And, perhaps most important, WHAT do we want decision makers to do and WHAT do we want to change?

The WHO! Decision makers include people who work in Congress and write the laws – Senators (www.senate.gov ) and members of the House of Representatives (www.house.gov) – and officials of the Executive Branch – the President and staff of the White House (www.whitehouse.gov ) – and employees of Federal agencies – Centers for Medicare and Medicaid Services (www.cms.gov ), National Institutes of Health (www.nih.gov ) and Food and Drug Administration (www.fda.gov ).

Your advocate in Congress and top Federal officials are usually your Senators and Congressman. These people make sure your interests are represented whenever Congress considers a bill or help if you have an issue with a Federal agency. One convenient place to find your Members of Congress, is www.congress.org. Just type in your zip code!

The HOW! How can you connect with your Senators or Congressman? First, it is usually a good idea to visit their Web sites and learn about them. Most Representatives (www.house.gov/house/MemberWWW.shtml )  and Senators (www.senate.gov/general/contact_information/senators_cfm.cfm ) have a Web site where they post a biography, press releases and other information.

To communicate with your Senators and Representatives, you can write a letter or send an e-mail. You can make a phone call to the member’s local office or Washington, D.C. office. Members of Congress often hold local town meetings for constituents, where you can ask questions. You can also request an appointment to meet with a member of his or her staff, whether at a local office or in Washington, D.C.

Okay, we covered the WHY, WHO and HOW of public policy. The last question, and perhaps the most important, is WHAT? What do we want to change, add or subtract from Federal programs for kidney patients?

Perhaps one simple but important exercise is just to let your Congress members know how important kidney disease is to you. Here is a short sample letter:

Dear [Senator or Congressman]:

I am writing to let you know that, as one of your constituents, I am a person with kidney disease. I receive dialysis treatments three times per week. You should know that the programs of the Federal government, such as Medicare, that serve kidney patients are very important to me – actually are lifesaving! I hope that as legislation affecting kidney patients comes before Congress, you will keep me in mind. Of course, if I could be helpful in providing you with more information about kidney disease, please let me know.

Sincerely,

Your Name

Of course, you can, and should, “customize” this letter with more personal information about you and your family, and perhaps describe the shortcomings you see in the care of kidney patients. The key to successful communication is credibility – write what you know about and what concerns you! And it is always a good idea to be polite.

In addition to this “heads up” letter to your Congress members, you can write about time- sensitive issues before Congress. AAKP posts information on its Web site about current Congressional action. For example, in 2002 Congress was thinking about cutting Medicare payments for home dialysis. AAKP mounted a vigorous campaign to prevent these cuts and posted “talking points” on its Web site about why these cuts were a bad idea, as well as letters from other patients to Congress members. It was the “patient voice” – well-informed, courteous but insistent – that helped make this campaign successful and turned back the proposed cuts.

Good policy begins with good ideas. What more needs to be done to improve patient survival, access to care, improved dialysis quality, more-productive scientific research, employment and eliminating kidney disease?

These are all potential topics for public policy action. AAKP is planning to expand the “Advocacy and Public Policy” content of its Web site in the near future – and also include information on State public policy advocacy. Stay tuned for updates and action tips!


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

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