As the health care community looks to home hemodialysis to improve the quality of life and overall management of patients with kidney diseases, all work should start by centering patient experiences and realities. I was diagnosed with kidney failure at the age of 2 in 1968 and luckily fell into the care of pioneer pediatric nephrologist Richard Fine, MD, who saved my life more than once with his innovative spirit. I was the first child to experience peritoneal dialysis in California, and I successfully managed my own home dialysis for 10 years. I have since founded the Renal Support Network (RSN) to empower patients with kidney diseases to become proactive in their care and hopeful about their future. After 13 years of dialysis and now living with my fourth kidney transplant, embracing the right treatment option has been key to my survival.
RSN consistently promotes home dialysis on its website through interviews and podcasts with health care professionals, nephrologists, and patients who are succeeding in this mode of care. The organization's educational materials and support groups start by laying a foundation of realistic assessments and expectations for the full range of treatments, from transplant to home hemodialysis.
The goal laid out by the Centers for Medicare & Medicaid Services (CMS) in the End-Stage Renal Disease (ESRD) Treatment Choices (ETC) payment model is to have 80% of new ESRD beneficiaries dialyze at home or have a transplant by 2025. This is a huge hurdle, as less than 15% of dialysis patients are currently on home dialysis. Patients need to overcome several barriers to be approved for home dialysis, and they should not be approved if they are not prepared to succeed. I have found it very valuable to educate them about the treatment details and help them to gain insights from other patients who are managing well on home hemodialysis and to interact with peers to build confidence so they can manage their care and thrive.
Campaign aims to expand home dialysis. Kidney News September 2021; 13:21. https://www.asn-online.org/publications/kidneynews/archives/2021/KN_2021_09_sep.pdf