Denied the Right to Choose Treatment

By Robby Richardson

RobbyI was diagnosed with kidney failure in 2006 and after that, I spent five years receiving peritoneal dialysis (PD) at home. Peritoneal dialysis left me consistently tired, frequently ill, and unable to balance my two jobs. At one point I was forced to give up my weekend gig as a historic tour guide in Savannah, Georgia.

After working with two centers and feeling unsatisfied, I was referred to my current facility where I met with my doctor. I remember his first words being, “You are too young for this and you could feel so much better on home hemodialysis.” When you hear this after five years of receiving peritoneal dialysis, it feels frustrating. Especially since I didn’t know there was another option for home treatment. That’s when I first learned about home hemodialysis. Let me tell you, I’m not a guy who does well with change, but at that time I had nothing left to lose. My life had become a downward spiral. I wasn’t giving tours anymore and going to work as a high school teacher was nearly impossible because I kept feeling worse every day.

So I made a decision. I began training to receive home hemodialysis. Since 2011, I have been receiving treatment at home because it suits my schedule and healthcare needs. Thanks to the more frequent treatment, I’m back to feeling like my normal, energetic self. I’ve opened my own Savannah tour company and married the love of my life.

Robby 2As great as my life sounds right now while receiving dialysis, I still can’t believe for five years my doctor never told me about home hemodialysis. I spent years receiving a treatment that instead of making me feel better, just made me feel worse and hopeless. I had a right to choose what treatment was best for me in the beginning; I had a right to know there was another option for me out there.

Today the majority of kidney failure patients are still being denied education and access to home dialysis. The primary reason is because the Centers for Medicare & Medicaid Services (CMS) is only reimbursing providers 20% of the cost to provide home dialysis training, and no one wants to make that kind of investment (even if it’s better for patients).