Numerous studies have shown that patients with End-Stage Renal Disease (ESRD) who dialyze at home, using either peritoneal dialysis (PD) or home hemodialysis (HHD) have a much better quality of life and excellent treatment outcomes, including increased survival rates and fewer hospitalizations. For most patients with ESRD, dialysis is the primary option when renal replacement therapy (RRT) is needed, and the overwhelming majority of these patients undergo dialysis in outpatient dialysis centers. Few of these centers offer home dialysis, and of those that do, most only offer PD. In fact, only 2 percent of dialyzors in the U.S. currently use HHD.
Home Dialyzors United (HDU) is working to improve access to home dialysis for all patients who wish to use this method of RRT, to promote unbiased education about all modality choices, and to ensure that efforts to promote the quality of dialysis treatment focus on improving the patient’s experience of care, treatment outcomes, and ability to lead a normal life.
Benefits of Home Dialysis
Home dialysis puts individuals with ESRD (and their families or care partners) in control of their treatment decisions. Home dialyzors are engaged in actively managing their disease rather than passively receiving medical services. Home dialyzors have flexibility in determining when and how to dialyze, more freedom to spend with family and friends, and more energy to pursue their interests, whether those include working, attending school, volunteering, or engaging in recreational activities and travel.
From a purely physiological standpoint, home dialysis is clearly superior. A functioning human kidney continuously filters the blood 24 hours a day, or 168 hours per week. However, the great majority of individuals with ESRD receive in-center treatments, three times a week for between three and four hours per treatment, or approximately nine to 12 hours per week. By contrast, home dialysis makes it possible to dialyze for longer periods at a slower, gentler pace, more closely approximating natural kidney function. Frequent, slower home dialysis is also less stressful on the patient’s heart, lowering the risk of premature death, and increasing the likelihood of survival to transplant, if that is the patient’s treatment goal. In addition, home dialyzors require fewer medications and fewer hospital services. Finally, although there are upfront costs to training a patient to dialyze at home, once the patient has been trained, the costs per treatment are lower.
Barriers to Increasing Use of Home Dialysis
Lack of Information about Home Therapies
Although the Social Security Act specifies that Congress intends for any patient who is a suitable candidate for home dialysis to be so treated, and Medicare requires centers to educate patients about all treatment options, too many patients are unaware that they can dialyze at home. According to the most recent information:
- Only 12% of patients report being educated about HHD.
- Only 24% of centers are certified to offer home hemodialysis (HHD and not all centers that are certified to offer HHD actually do so.), This means that access to HHD may depend on such arbitrary factors as where the patient lives.
- Rural areas are traditionally underserved, and, according to the Medicare Payment Advisory Commission’s most recent report, the number of rural centers is decreasing.
- As a result, fewer than 2% of patients with ESRD are currently doing HHD, although many nephrologists believe that a much higher percentage of patients would be good candidates for HHD and, according to surveys of nephrologists, most would choose home dialysis for themselves or family members.
Moreover, efforts to improve patient awareness of treatment choices too often ignore HHD as a treatment option. For example, in January 2013, the Patient-Centered Outcomes Research Institute (PCORI)* contracted with Arbor Research to create a decision tool to help dialysis patients make an informed decision about RRT. In preparing the study, entitled “Empowering Patients on Choices for Renal Replacement Therapy” (EPOCH-RRT) Study,” Arbor looked at in-center treatment and PD, but did not consider HHD. HDU strongly urges that omitting HHD violates PCORI’s mandate, and its stated mission to provide patients with “information about which approaches to care might work best, given their particular concerns, circumstances, and preferences.”
The Partner Requirement:
The FDA clearances for dialysis machines to be used in the home require that the patient have a care partner who is also trained to operate the equipment and who can assist in emergencies. This requirement prevents people who live alone (or whose care partner is temporarily absent) from doing HHD, and may place an undue burden on the family unit. HDU believes that a dialyzor should be able to choose to perform HHD without a care partner. The center should discuss with the patient the risks of dialyzing alone, assess the dialyzor’s ability to perform his or her own treatments without assistance, and discuss alternate safety precautions available to the patient if the patient chooses to forego having a care partner.
Inadequate Reimbursement for Home Training
Recently, CMS increased the payment to centers to train patients for home dialysis to $50.16 from $33.44 per training session. While this is a step in the right direction it is still not adequate to pay for the typical 4-5 hours per day, 3-4 week training typically needed for HHD, and thus, provides a disincentive for centers to offer HHD. In the short run, the payment for HHD training should be increased; in the long run, we would be happy to work with CMS on other potential training and payment models.
Patient Centric Quality Measures
HDU is also concerned about the quality measures used to evaluate care given to chronic kidney failure patients, and to adjust payments to individual dialysis centers. While biochemical data are important in the clinical management of ESRD, they have little relevance to promoting the quality of life for patients and their families. HDU believes that the goal of treatment for ESRD, like the goal of treatment for other medical conditions, should be to provide optimal care, not just adequate dialysis.
* * *
Home Dialyzors United (HDU), a 501(c)(3) non-profit organization, is the only dialysis patient group dedicated to home dialysis. We believe that patients with end-stage renal disease (ESRD) and their families and care partners can lead a normal life, enjoying family and friends and pursuing employment, education, volunteer, and leisure activities. We further believe that Congress, the Centers for Medicare & Medicaid Services (CMS), which pays the largest share of the costs of dialysis treatment, and the Food and Drug Administration (FDA), which regulates devices used in dialysis, all have a role to play in eliminating the barriers that prevent more individuals with ESRD from getting optimal care.
*PCORI is a nonprofit, nongovernmental organization created by the Affordable Care Act and funded from general Treasury Revenues, the Medicare Trust Fund, and a tax on private insurers.