Recognizing that an educated patient ultimately has better healthcare outcomes, the National Kidney Foundation (NKF) and Dialysis Patient Citizens (DPC) teamed up on May 22 to urge lawmakers to pass a bill that would provide comprehensive treatment information to patients prior to the initiation of dialysis.
Forty kidney patients from around the U.S. met with their Members of Congress to discuss the inclusion of the Kidney Care Quality and Education Act (S. 691) in the Medicare bill currently being considered in the Senate. In particular, the patient advocates, representing NKF's "People Like Us" patient empowerment initiative and DPC, requested the establishment of a Medicare pre-dialysis education benefit. This provision was already included in the House Medicare bill, passed last summer.
"Both complications and cost of kidney disease can be reduced if education is provided before dialysis begins or transplantation occurs. However, most kidney patients do not receive this information on time because Medicare currently does not require or reimburse education on treatment options until a patient has qualified for the End Stage Renal Disease Program," says John Davis, NKF CEO.
The pre-dialysis education benefit would include a maximum of six sessions, reimbursed by Medicare, covering an overview of kidney function, complications associated with declining kidney function, a comprehensive review of treatment options, including discussion of vascular access alternatives for dialysis, the transplant waiting list and the process of identifying living kidney donors.
"The philosophy of "People Like Us" is that an educated patient makes informed decisions and feels in control of their own health care, rather than feeling controlled by their medical situation. The passage of this legislation will help ensure that patients fully understand their treatment choices and how best to manage their disease. Ultimately, we know this will improve patients' lives while reducing costs of care," says Tracy Fortson, NKF Managing Director of Constituent Services.
"People Like Us" patient advocate Amy Nash of Buffalo, New York, had a transplant that lasted 21 years, but has spent the last four years on dialysis. A marketing professional, mother and active volunteer for her church, her son's school and the NKF, Nash is grateful for the information she received on the various types of dialysis that enabled her to choose the option that works best for her lifestyle.
"Because of my general good health and willingness to comply with medical directions, peritoneal dialysis (PD) at home was recommended for me immediately. But I know lots of other patients who are totally unaware of PD as a choice. …Kidney disease can be terrible, but managing it doesn't have to be terrible, too. With adequate education available to all patients, they and their families can find a solution that allows them to live their best life every day. I always want to be known as a wife and mom first, not a kidney patient, and with proper education I can take care of my family and myself," says Nash.
"It is important for those who are making the decisions that affect kidney patients to hear from kidney patients," says Tom Musick a home hemodialysis patient from Andover, Kansas and a DPC Patient Ambassador. "My job and the role of other empowered advocates is to inform Congress about the need for more education—both preventative education and pre-dialysis education. Proper education will hopefully result in fewer patients needing dialysis and delay the onset for those who eventually need dialysis—improving patients' quality of life and saving Medicare resources."
Kidney disease is a major health problem in the United States and around the world. Nearly 75,000 Americans are on the waiting list for a lifesaving kidney transplant and 341,000 rely on a dialysis machine to keep them alive. Recent studies indicate that the disease is on the rise and as many as 30 million Americans currently have chronic kidney disease and millions more are at risk.
To learn become a member of NKF's People Like Us Take Action advocacy team, click here.