(Fort Worth, TX) February 8, 2007—Proposed changes to the United Network for Organ Sharing (UNOS)organ allocation program could hurt polycystic kidney disease (PKD) patients.

PKD is the most common, life-threatening genetic disease, affecting 12.5 million people worldwide. PKD causes cysts to form on the kidneys, limiting their ability to filter toxins from the blood. Dialysis and transplantation are the only treatments for kidney failure. There is no cure for PKD.

UNOS administers the nation’s only Organ Procurement and Transplantation Network (OPTN), which was established by the U.S. Congress in 1984. UNOS is considering changing the way it allocates kidneys to patients who are waiting for a transplant. The changes would make it more difficult for most PKD patients to receive kidneys. Here’s how:

The proposed changes would negatively weight age, essentially listing older individuals lower on the list and making it more difficult for them to receive transplants. (Most PKD patients do not see the onset of symptoms until age 50+)
Once a recipient has been assigned a ranking, it will be very difficult, if not impossible, for that individual to move up the list as younger people will continuously be ranked ahead of him/her.

The PKD Foundation has been working with UNOS for about two years to ensure PKD patients benefit as much as possible from the new allocation system. This change affects not only PKD patients, but diabetics and other patients who may suffer kidney failure. Currently, there are nearly 70,000 patients on the OPTN list waiting for kidney transplant.

UNOS is hosting a public forum, where all interested patients, physicians and the public can offer input on the proposed changes. The forum is scheduled for 8 a.m. to 4 p.m. February 8 at the Dallas/Ft.Worth Airport Marriott. To arrange interviews with PKD patients, doctors or staff; contact Media Manager, Jennifer Robinson at (816) 268-8493 or jenniferr@pkdcure.org.