Home Dialyzors United (formerly NxStageUsers) is a 501(c)(3) non-profit organization whose mission is to support home dialysis patients with chronic kidney failure, also known as End Stage Renal Disease, and to advocate for optimal therapy and rehabilitation. In slightly over four years, Home Dialyzors United (HDU) has grown into the largest group of home dialyzors whose members are patients and care partners. On behalf of those patients, we are writing to comment on the ESRD Network Organization 2012 Contract Award. We feel we are highly qualified to comment because our group consists of the very people for whom the ESRD networks were created—the patient and his or her family.
Rather than undertake the daunting task of commenting about each and every subdomain, we would like to express our philosophy about the AIMs and several of the domains within those categories.
AIM 1: Better care for the individual through beneficiary and family centered care
Patients cannot be expected to become equal partners in their care unless they are given a place at the table and, more importantly, are able to have their voices heard and heeded. Networks must not become another layer of bureaucracy that simply give lip service to the idea of shared decision making.
In order to achieve that goal, education must be of primary importance. For instance, Network 12′s recent addition of regional educational meetings has been successful and should be applauded. Network 5′s Kidney End of Life Coalition web site is another stellar example. However, many patients have difficulty traveling to meetings in a location that is somewhat distant from their home. This may be due to unnecessary debilitation, family commitments or work schedule. Appointing a network employee to conduct more local and less formal education and discussions should be considered—a sort of “roving ambassador”.
We also are pleased that each network is required to have ten patients (three of whom are on the transplant wait list) as Patient Participant Advocates. Those advocates should be used as more than rubber stamps of the network. Besides the quarterly meetings, these advocates are in a unique position to express patient concerns on a continuing basis. In addition to the patient advocates, we strongly urge the addition of the requirement to include two care partners on this committee. One of these individuals should be a care partner of an in center patients and another who is partner to a home patient. Chronic kidney failure is not a one person disease. Not only does it affect the patient, but it affects the entire family on a daily basis and family members have their own unique issues which impact the patient’s outcomes. Care partners and family members cannot become engaged unless they are participants. That also means the Patient Participant Advocates should have the opportunity to meet with the Medical Advisors. Ensuring better patient care must be a collaborative effort. Dialysis patients know dialysis better than anybody else. We believe nephrologists can learn much from the Patient Participant Advocates.
AIM 2: Better health for the ESRD population
We feel that better overall health for those with chronic kidney failure is embodied in a few principles:
1) to decrease mortality and morbidity by offering each patient the very best therapy that is uniquely suited to the person’s lifestyle and life goals
2) to make that decision through equal collaboration of the patient and the renal health team
3) to provide thorough, unbiased, and quality education in order that patients and families can make a modality choice with true “informed consent”
4) to ensure that all patients have access to their individual modality choice
5) to treat patients with respect and fairness
Standard dialysis care has often become minimal and debilitating. Psychosocial support is also woefully lacking as renal social workers and other professionals have been forced to abandon their true role in order to comply with burdensome regulations.
In addition, we believe patients grievances are understated in the End Stage Renal Disease Network Organization Program’s Summary Annual Report predicated upon our own communication with patients. Too often patients and family feel that concerns or complaints voiced at either the facility or network level may incur retaliation. We urge the Networks to work to instill a greater atmosphere of trust with patients so they no longer fear bringing up issues requiring attention.
Domain B states “…Promoting home dialysis in qualified beneficiaries.” Networks can incentivize home dialysis by offering education to patients and families about the advantages of home dialysis and by working with providers to ensure that all home modalities are offered. This includes more frequent and extended time therapy. Patients should have access to home training that is both within a reasonable distance of their home and not disruptive to their work schedule.
Domain B also addresses “…vocational rehabilitation and improvement in quality of life.” We strongly feel that each network should publish employment statistics on their web site by center and should be required to assist providers to improve those statistics. Presently, only 21% of patients, aged 18-54, are employed. This is a sad commentary since the original intent of the Medicare ESRD program was to support employed patients.
Employment should not be the sole aim of renal rehabilitation. True renal rehabilitation should be defined by the patient himself. This would mean choosing a therapy that would provide the desired quality of life. It would encompass various modalities and frequencies and would address useful and fulfilling life pursuits, especially keeping in mind the person’s age, family situation, culture, education, and activity level.
Furthermore, almost no data has been collected on patient experiences, either positive or negative, during the last 40 years. When queried, almost no medical professionals would accept the treatment modality that more than 90% of their patients receive. While QIP will require implementing a quality of life survey, simply giving the survey is inadequate. Action must be taken on those results.
AIM 3: Reduce costs of ESRD care through Improvement of care
The cost of dialysis is enormous. Although CMS pays approximately $39,000 for dialysis therapy, the total cost is much higher. Add in hospitalization, which represents approximately 36% of dialysis costs and medications and other costs, the total is nearing $80,000.
One often overlooked expense is the number of debilitated patients who are receiving monthly disability checks. The average disability check per month is now $1,100 per person. Considering there are approximately 96,500 dialysis patient between the ages of 18-54 who not employed, these are other exorbitant societal costs not directly associated with the Network responsibilities.
Taxpayers foot the bill for the additional social services costs and lost opportunity costs of debilitated patients.
The ESRD networks have been a valuable addition to the spectrum of kidney care. Presently, there are 18 such networks across the country. HDU would like to propose the creation of one more network—Network 19—which would be composed of patients, care partners, and family members, which would be funded by and report directly to CMS. As a starting point this network could begin to develop a coordinated defined national renal rehabilitation model. There is no better expertise than that of real life experience. This idea would in no way preclude the continued incorporation of those named groups within existing networks.
The proposed contract addresses the specific roles of the networks including promoting patient independence, protecting access to care, promoting all modalities, improving clinical outcomes and promoting care coordination. We believe the ESRD networks have the capacity to help improve the lives of the patients to whom they are responsible, but they cannot do it alone. We support any and all network initiatives that give patients, care partners, families, and patient led organizations a larger voice in the decision making process and the implementation of network goals.
HDU and others believe in a simple philosophy:
“In order to continually improve outcomes that are important to patients and taxpayers, renal replacement therapy must be synonymous with long-term patient employment and re/habilitation.”
Thank you for the opportunity to comment on the ESRD Network Contract.
 2009 Consolidated Network Report, Table 20
 Perceptions about renal replacement therapy among nephrology professionals. Schiller B, Neitzer A, Doss S. Nephrol News Issues. 2010 Sep;24(10):36, 38, 40.
 Ways & Means Social Security Subcommittee Hearing on Securing the Future of the Social Security Disability Insurance Program, Dec. 2011
 2009 Consolidated Network Report, Table 20