Why is it important to know what is happening in Congress? This past May and June provided very good examples of why patients should always be alert to proposed Medicare changes and how such changes could greatly impact our access to care.

Out of the blue in early May, AAKP learned that a proposed Medicare legislation that would cut payments for home dialysis was being considered by the U.S. House of Representatives. This legislation included home hemodialysis, hemofiltration and peritoneal dialysis. Such a proposal would have been disastrous for patients as it had the potential to create a disincentive for dialysis units to continue home dialysis programs and even create greater barriers for the development of new home dialysis programs and technologies.

AAKP took immediate action to ensure that fellow patients would not lose a treatment option. Those who subscribe to our Internet newsletter, Renal Flash, immediately received a "Special Alert" newsletter. It explained the issue, how it impacted patients and what actions to take in contacting Representatives. We posted information on our web site that included Congressional contact information and letters from other patients. Our National Office began calling Representatives and immediately arranged visits with key health staff members of the Health Subcommittees of the Ways and Means and Energy and Commerce Committees.

AAKP's points to Congress centered on how a cut would impact patient choice as dialysis facilities could choose to stop offering home care and cause access difficulties to patients. We cited U.S. Renal Data System (USRDS) studies that showed how patient outcomes increase with home dialysis and that these patients live longer and have a better quality of life, thus affording the opportunity to work, be active or have an independent lifestyle. We also explained to Congress that home dialysis is the option of the future as a doubling of ESRD patients will occur in the next 10 years, while simultaneous nephrology and nursing shortages will make home dialysis a viable option to curtailing the ever expanding demands on facility resources.

AAKP members, however, made the greatest impact. Many patients wrote letters and called their representatives to share their personal stories. This made a huge impact and several health staff members told us how much their bosses (your Representatives) enjoyed hearing from patients and how much it changed their understanding of dialysis. One of our AAKP members even received a letter back from her Congressman!

So why stay informed about what happens in Washington? Because without any forewarning your dialysis, medications, treatment options or any other number of Medicare issues can be directly impacted. I urge you to visit the AAKP web site weekly, receive our Internet newsletters, read aakpRENALIFE and generally stay informed about policy and regulatory issues that directly impact you.

Kris Robinson is AAKP's Executive Director

Washington Report, aakpRENALIFE, Vol. 18, No. 1, July 2002

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