Memphis, TN—Home Dialyzors United (HDU) reached out to Dr. Francesca Tentori, the Primary Investigator of the “Empowering Patients on Choices for Renal Replacement Therapy” (EPOCH-RRT) study, in a call on March 19th, National Home Hemodialysis Day. We expressed our concerns about the omission of home hemodialysis in their upcoming study and decision tool and then discussed how to avoid harming patients by ensuring that they are told about all of the types of home hemodialysis (conventional, short daily, nocturnal) and other options in this study.
“We are pleased that Dr. Tentori was receptive to our invitation and asked to continue discussions with us. She has also reached out to HDU in a collaborative fashion to assist her in developing additional patient tools and provide patient centered resources.”
Having a choice of dialysis options is so vital that Congress mandated in the Social Security Act that the maximum practical number of patients who are medically, socially, and psychologically suitable candidates for home dialysis or transplantation should be so treated. (SSA Section 1881(c)(1)(A)(i)(6))
And further, Medicare, in the Conditions for Coverage for Dialysis Facilities (Section 494.70) requires clinics to educate patients about all of their options, and specifically names home hemodialysis and peritoneal dialysis. Clinics must even tell their patients where to get treatment options that they do not offer.
The new decision tool developed by Arbor Research Collaborative for Health, with funding from the Patient Centered Outcomes Research Institute (PCORI), only provides for two treatment options, in-center and peritoneal dialysis. While the study is called “Empowering Patients on Choices for Renal Replacement Therapy” (EPOCH-RRT), HDU is concerned that the study only addresses two of the seven potential dialysis treatment modalities, and ignores home hemodialysis in its entirety. According to Dr. Tentori, PCORI has said they will not provide additional funding for any further study in this area, thus omitting home hemodialysis, transplantation, and other options altogether from the treatment arena.
Home Dialyzors United (HDU), the only dialysis patient group dedicated exclusively to peritoneal dialysis and home hemodialysis, has a mission to inform, inspire, and advocate for home dialysis. Because of the importance of home hemodialysis, HDU has had serious concerns about the limitations of the decision support tool under development by Arbor, and funded by PCORI, because we believe that kidney patients deserve to know ALL of their options. Even most nephrologists who were polled about their own preference for treatment, should they require dialysis, responded in the majority that they would choose home hemodialysis for themselves or family members.
“As a home dialyzer for 7 and a half years, I couldn’t keep up with my hectic schedule if it weren’t for home dialysis. I feel better, my labs are great, and I can enjoy quality time with my family,” says HDU President Tina Harrison. “We are excited that Dr. Tentori has invited our input and collaboration on this, and possible future studies, to assure that home hemodialysis is properly presented as a legitimate treatment choice. We look forward to future discussions and a productive outcome which represents all dialysis treatment modalities, including home hemodialysis.”
Contact: Tina Harrison, President, Home Dialyzors United