The same year I was born, my dad was diagnosed with a genetic form of chronic kidney disease (CKD) and told he had 20 years to live.
When I was 20, I was diagnosed with the same kidney disease that took my father’s life in his early 40’s. By the time I was 54, my kidney function had dropped to a level where I needed a transplant. This journey was one of the most challenging things I’ve ever experienced. CKD research, patient engagement and access to kidney transplants was lacking. It is my hope that other CKD patients will have a smoother journey, filled with hope.
Currently, there are over 26 million Americans with chronic kidney disease (CKD), yet only 10 percent are aware they have it. There are more than 450,000 people in the U.S. on dialysis for kidney failure. Medicare spends over $87 billion on the care of people with CKD. Investment in research and programs to improve early detection, slow kidney disease progression and improve access to kidney transplantation is a cost-effective strategy to improve lives and lower health care costs.
While Medicare does not require annual approval by Congress, each year federal funding for other kidney disease programs must be appropriated by Congress. Important work is being done at the Centers for Disease Control and Prevention (CDC), National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), and the Health Services and Resource Administration (HRSA) to advance kidney disease research and improve access to kidney transplantation. However, this work cannot continue nor grow without the continued support of our elected representatives.
I hope your readers will ask David Schweikert, John McCain and Jeff Flake to expand federal research to save lives, kidneys and money. They can add their voice to the cause by reaching out to their congressional representative at www.kidney.org/takeaction.
– Risa Simon is kidney patient and advocate for the Kidney Action Committee in Phoenix.