PKD Families Applaud Presidential Signing of Genetic Discrimination Ban
Move could increase number of patients in treatment & clinical trials
Kansas City, MO (May 21, 2008) - 600,000 Americans who suffer from polycystic kidney disease (PKD) and their families stand to benefit from a genetic discrimination ban, signed into law today by President George W. Bush. The Genetic Information Non-Discrimination Act (GINA) will largely stop employers and insurance companies from collecting genetic information or using such data for hiring, firing or setting insurance premiums.
"This new law holds such hope for our family!” exclaimed New York PKD patient Heidi Cambareri. “I've seen the devastating consequences PKD has had on my father, uncle, and aunt's lives. Now I also carry the defective gene and have faced difficulty getting life insurance and have been worried about the implications of my diagnosis when I re-enter the workforce,” she added. “Most importantly, I worry about my two little girls. We don't know if they have the disease yet. We have lived in fear of what genetic testing or an early diagnosis could mean to their future insurability or employment. Our hope is that changes brought about by this legislation will allow us to consider genetic testing, and possible participation in clinical trials, which could end up saving the lives of thousands of patients living with PKD."
PKD is one of the world’s most common, life-threatening, genetic diseases. For the 600,000 Americans suffering from PKD, fluid-filled cysts grow throughout the kidneys and eventually, cause the kidneys to fail. Dialysis or transplantation are the only treatment options for kidney failure. There is no cure for PKD. Until one is found, PKD will continue to affect every generation of every family that carries the PKD gene.
Many people know they carry the PKD gene. Yet, they choose not to seek testing, treatment or participate in clinical trials. They worry about having a PKD diagnosis on their health record and how that genetic marker may affect them or their children.
“Regrettably, genetic discrimination in America is alive and well – jeopardizing the insurability and employability for all who inherit disease causing genes – through no fault of their own,” said PKD Foundation President & CEO Dan Larson.
The not-for-profit PKD Foundation leads the fight against PKD through research funding, advocacy, patient education and support. For more information, visit www.pkdcure.org or call 1-800-PKD-CURE. For interviews with PKD patients or advocates, contact PKD Foundation Media Manager, Jennifer Robinson, jenniferr@pkdcure.org.