By Brenda Dyson

Unfortunately, as many of you are aware, AAKP was forced to cancel its 2004 Annual Convention due to Hurricane Frances. I share your disappointment, as I was looking forward to meeting each of you. I wish to extend my deepest appreciation to everyone affiliated with AAKP for the support received throughout the cancellation of our Annual Convention.

Let me take this opportunity to provide you with an update of AAKP’s achievements throughout the past year, and I would like to share with you AAKP’s future objectives and goals.

As the only national non-profit association directed bykidney patients for kidney patients, AAKP has a unique place in the kidney community. Our first concern is to always represent the needs of fellow patients. Our National Board of Directors must be comprised of at least 50 percent patients. Our Directors use many different treatment modalities, including in-center home hemodialysis, nocturnal dialysis, daily home hemodialysis and transplantation. Chronic kidney disease (CKD) patients are also well represented. I, myself, am a transplant recipient.

This coming year promises to be exciting for AAKP and its members, filled with new patient programs and patient advocacy. Before I discuss some of AAKP’s plans for the coming year, let me briefly fill you in on our achievements throughout the past year.

2003-2004 Achievements

This past year, AAKP began reshaping the future of public policy for people with kidney disease, and AAKP has made sure the patient voice has been heard in Washington, D.C.

In October 2003, AAKP wrote Tommy Thompson, Secretary of the U.S. Department of Health and Human Services, and requested the Federal government establish a National Commission on Kidney Patient Outcomes to develop new recommendations to improve the quality of care for kidney patients. With recent advances in science and medicine, we must take a fresh look at dialysis and transplantation – and a National Commission would provide a great forum to do just that. Currently, we are pressing the Federal government to make this commission a reality.

In April, AAKP called on more than 4,000 dialysis clinics nationwide to refer kidney patients to the new Medicare prescription discount card program. – ensuring that all kidney patients who might benefit from the card must be a kidney community priority.

In August, AAKP joined the Access to Benefits Coalition (ABC) – a partnership between the Medicare program and 70 non-profit organizations – to educate kidney patients about the new Medicare prescription drug programs. AAKP was the first national kidney disease organization to join ABC. As we all know, many patients have high out-of-pocket prescription drug costs. By joining forces with organizations such as ABC, we are working to help patients manage the financial costs of kidney disease.

AAKP has stepped up and advised the Centers on Medicare and Medicaid Services (CMS) on its proposed coverage changes to drugs received during dialysis and reimbursement to nephrologists. AAKP has also worked with Congress and its Government Accountability throughout the past year on public policies affecting kidney patients – including an investigation on access and quality of care in dialysis clinics.

Throughout 2004, AAKP continued many of its programs and services. In addition, AAKP introduced new and exciting programs and services. During AAKP’s 2003 Annual Convention, we unveiled the national initiative AAKP Says I Can! In less than one year, the campaign generated 280 newspaper articles in 14 states with a remarkable readership of more than 12 million. The campaign has done an incredible job transforming the negative perception of kidney patients into a positive perception that kidney patients can do anything they desire and live life to the fullest.

AAKP held more than 15 of its CKD educational sessions, Kidney Care: Finding Your Strength, throughout the United States. These one-day patient conferences reached more than 1,000 CKD patients this year. Attendees were educated about kidney disease and received free anemia screenings. AAKP looks forward to continuing this program in 2005.

Because of this success in the CKD population, AAKP launchedUnderstanding Your Hemodialysis Options for CKD and end-stage renal disease (ESRD) patients. The first program took place in Tampa, Fla., and meetings are slated for Texas, California and New York. The national program offers an overview of hemodialysis and provides patients with the knowledge to choose a hemodialysis treatment that works best for them.

To reach further into the community, AAKP also welcomed two new chapters this year. The AAKP Space City Chapter, located in Houston, and the AAKP Lehigh Valley Chapter, located in northern Pennsylvania, brings the number of AAKP chapters nationwide to 15. These new chapters – and all AAKP chapters – help our organization support local community resources for kidney patients.

AAKP also introduced a brand-new Web site this year. The redesigned Web site has expanded content and is more easily navigated. The Web site averages more than 100,000 visits per month. Some of the most popular pages in 2004 were AAKP Patient Plan^©Phase One, with more than 5,400 visits, Understanding Your Hemodialysis Access Options, with more than 4,200 visits and Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function, with more than 3,500 visits.

In July, AAKP published the first edition of its new electronic newsletter, Kidney Transplant Today, which joins AAKP’s two other e-mail newsletters, AAKP Renal Flash and Kidney Beginnings: The Electronic Newsletter. All newsletters feature important updates about programs, medications and research.

In addition, AAKP’s print publications are reaching an ever-growing audience. We distribute more than 120,000 copies of aakpRENALIFE each year and 240,000 copies of Kidney Beginnings: The Magazine. To date, more than 350,000 copies of AAKP Patient Plan^©have been distributed nationwide. AAKP also prints Spanish editions of many of our educational materials and provides a Spanish section on the AAKP Web site.

Looking to the Future

As we look to improve our healthcare, there is much work to be done. AAKP is now analyzing proposed Medicare policies affecting dialysis clinics, Medicare private insurance plans and the new Medicare prescription drug benefit taking place in 2006.

AAKP works hard to build relationships with Congressional members and staff. In the past year, Congress sent a clear message that Medicare payments, including reimbursement for dialysis, must be tied to quality. AAKP welcomes Congress and Medicare’s “pay for performance” agenda.

I would like to thank each and every one of you involved with AAKP for your help, guidance and efforts in making your organization a success throughout the past year. Our National Board of Directors, Medical Advisory Board, staff, volunteers, members, as well as concerned patients and family members worked diligently to make 2004 a great year!

We have a great deal of work ahead of us. But I know together, we as patients can lead the kidney community.

Brenda Dyson is the Special Studies/Patient Services Coordinator for ESRD Network 8. She serves as President of AAKP, and she is a two-time kidney transplant recipient.

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

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