Download improving patient access to home dialysis

INSPIRING, INFORMING, AND ADVOCATING FOR AN EXTRAORDINARY QUALITY OF LIFE FOR THE
HOME DIALYSIS COMMUNITY
IMPROVING PATIENT ACCESS TO HOME DIALYSIS
MAY 2016
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 (as required by statute), 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. The great majority of individuals with ESRD receive incenter treatments, three times a week for between three and four hours per treatment, or approximately nine to 12 hours per week. By
contrast, and with the recent approval of nocturnal dialysis, it is now 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. Efforts to improve patient awareness of treatment choices too often ignore HHD as a treatment option. According to
the most recent information:
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Only 12% of patients report being educated about HHD.
Only 24% of centers are certified to offer home hemodialysis (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.
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.
Inadequate Reimbursement for Home Training:
Although CMS has increased the payment to centers to train patients for home dialysis to $50.16 from the original $33.44 per training
session, the payment amount 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. Moreover, CMS has stated that a portion of home dialysis training costs
was taken out of the bundled payment to create a separate payment for home dialysis training, HDU does not understand why any
payment for home dialysis training should be included in the bundle and received by facilities that do not offer this training. 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.
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INSPIRING, INFORMING, AND ADVOCATING FOR AN EXTRAORDINARY QUALITY OF LIFE FOR THE
HOME DIALYSIS COMMUNITY.
Lack of Access in Rural Areas to Home Dialysis Modalities
Rural areas are traditionally underserved, and, according to the Medicare Payment Advisory Commission’s most recent report, the
number of rural centers is decreasing. Recent advances in telemedicine will help this underserved population. In the 2016 Physician
Fee Schedule final rule, CMS created 12 new codes for physicians to use to bill for telemedicine visits to home dialysis patients.
HDU commends this action. However, despite comments urging CMS to allow nephrologists to bill the new Chronic Care
Management Codes for coordinating services to ESRD patients, the final rule continues to exclude nephrologists from billing these
codes, leaving dialysis patients who have multiple chronic conditions to coordinate their own care. The lack of care coordination for
patients with multiple chronic conditions has been a major issue for a lot of dialyzors, including home dialyzors.
The GAO Report:
The Government Accountability Office (GAO) Report, Medicare Payment Refinements Could Promote Increased Use of Home
Dialysis, GAO-16-125, released in October 2015, acknowledges that home hemodialysis offers patients a better quality of life and
improvements in physical and mental health. The report identifies specific statutory provisions and regulatory decisions in the
physician payment policies under Medicare’s Physician Fee Schedule, and facility payment policies under the End-Stage Renal
Disease Prospective Payment System, that create incentives to use in-center rather than home dialysis modalities.
HDU was pleased to be the only patient organization invited to offer comment and review the draft document. The GAO
recommendations include increasing the accuracy of cost report data, especially for home hemodialysis. The report also
acknowledges the shortcomings of the Kidney Disease Education Benefit. HDU encourages support for education far earlier in the
disease and appropriate reimbursement for both early education providers and for home dialysis training.
The Food and Drug Administration’s Partner Requirement:
The FDA clearances for dialysis machines to be used in the home require that the patient have a care partner 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 with or
without a care partner, as their training and comfort level dictates. 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.
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. A recent study by
Urquhart-Secord et al in the AJKD cited the following: Patient priorities for outcomes emphasize quality of life over outcomes that
are frequently reported in hemodialysis trials: biochemical markers, mortality, and adverse events. In view of this mismatch,
researchers should consider interventions that are likely to improve patients’ overall well-being and measure and report patientimportant outcomes.
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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.