NxStageUsers is a non-profit organization whose mission is primarily to support home patients with chronic kidney failure, also known as End Stage Renal Disease (ESRD) and to advocate for optimal treatment and rehabilitation. In a mere four years, NxStageUsers has grown into the largest group of home dialyzors whose members are patients and care partners. On behalf of those members, we are writing to comment on the establishment of the Exchanges and the Qualified Health Plans.
NxStageUsers perspective is unique because our members live with the realities of kidney failure every single day. Being an independent organization, we are focused totally on patient outcomes.
The Exchanges are a laudable step forward in improving the present health care system by creating better access to coverage and offering a choice of plans while still fostering competition. However, because the structural framework of the Affordable Care Act leaves much yet to be decided, we also have several concerns. As the process goes forward, we strongly urge you to not only consider short term improvements but also long range goals and consequences.
First and foremost, dialysis is inherently essential to sustain the lives of over half million people with chronic kidney failure and should be included in the essential benefits package. Without dialysis or transplantation, the only outcome for these patients is death.
Modality Choice and Renal Rehabilitation
The original intent of the Medicare ESRD benefit was rehabilitation and continued employment for those receiving dialysis. There have been negative unforeseen consequences of that legislation, however. Large, publicly held corporations began offering factory like dialysis services to the detriment of optimal patient outcomes. Disability and debilitation have now become the norm. Decisions made regarding the exchanges can help rectify that decades old problem.
All dialysis treatment modalities should be included in the essential benefits package—in-center and home treatment, short daily and nocturnal hemodialysis, and peritoneal dialysis. An individual’s choice regarding their treatment modality must be made within a shared decision making model to foster quality of life and renal rehabilitation.
An important consideration to encourage rehabilitation would be to mandate that patients have convenient access to all modalities and time schedules, even if it is necessary to receive care “out of network.” Presently, not all centers offer all modalities. Patients may need to travel many miles to an “in network” center that does offer the chosen form of treatment. Others may not even have that option.
Every Other Day Dialysis
In center patients normally dialyze three times per week with one, two day gap between treatments each week. Studies have shown that dialysis patients have a increased chance of hospitalization and death following what is termed the “killer weekend.” Therefore, NxStageUsers also recommend that the Exchanges include the provision for every other day (EOD) dialysis without demanding “medical justification.”
Medicare Secondary Payer and Employment
We urge you to include the Medicare Secondary Payer (MSP) provision in all Health Insurance Exchanges. This measure alone is estimated to create a $6 billion savings over ten years. Retaining the MSP means that patients who begin dialysis while in an Exchange would have the option of continuing employer group insurance plans and/or private insurance for 30 months.
In addition, NxStageUsers recommends that the MSP be tied to specific rehabilitation outcomes, such as patient employment for those 18-54 years of age. This stipulation would ensure that additional monies garnered from billing private insurance (at a higher rate than the Medicare reimbursement) would be funneled into patient care rather than into additional profit. Employed patients pay taxes and do not draw disability payments, a further source of savings. Presently, a mere 21% of patients in this age group are employed either full time or part time, only 2% through renal rehabilitation. We recognize that allowances must be made for those who are unemployed through no fault of their own, such as layoffs, or business closings.
Furthermore, centers should be required to offer treatment hours that are tailored to the schedules of working patients. At the present time, only 24% offer after 5 PM treatments.
We hope that the introduction of the Health Insurance Exchanges will realign renal care with the original vision of the Medicare ESRD program.
NxStageUsers appreciates the enormity of the task ahead. We would be pleased to provide further input into the discussions.