Congress must stand up for dialysis patients like me

Multiple health care calamities brewing across the country — some precipitated by COVID-19, others that long preceded the pandemic — are getting little attention from policymakers in Washington. One that will be particularly disastrous is the 20 percent cut in the Centers for Medicare & Medicaid Services’ finalized the Physician Fee Schedule Rule for 2022, which threatens the survival of people like me who need dialysis. Like many of the half-million Americans who require dialysis, I rely on the care of office-based specialists to make sure that I can properly receive the dialysis treatments I need to live. The CMS-directed cuts have impacts beyond vascular access; they impact cancer patients, fibroid patients, people with Peripheral Artery Disease, and many more specialty care providers.  

For the past eight years, I have needed dialysis because my kidneys were failing. Some people who need this procedure, which mechanically does the kidneys’ job of removing waste products from the bloodstream, go to dialysis centers several times a week. Others, like me, do it at home. I prefer this approach because it does not confine me to a restrictive schedule: I can dialyze when it is convenient around my work and volunteer schedule. People like me dialyze to live, not live to dialyze as often occurs to people who go to incenter facilities.

The ability to do dialysis requires access to the bloodstream. This is generally through a fistula, but may be with some other type of access. In order to create a fistula in the arm, a surgeon must create some type of “supervein.” Access is gained by placing a needle through the fistula. This process prevents bleeding when not in use. 

It’s not just enough to create the fistula. It must be maintained, and sometimes it must be fixed within a couple of hours to avoid infection or hospitalization. For most of my years doing home dialysis, I have relied on the care I received at a stand-alone surgical center operated by my kidney specialists’ group practice to keep my fistula working. Several of the nephrologists in that practice were also the surgeons who performed the routine care to keep my fistula working. They know me well and understand my situation.

It has been reassuring to know that, in the event my fistula stopped working, I could get the issue resolved quickly and safely by clinicians who knew me and my case. Even in an emergency, I could undergo a diagnostic procedure and intervention, often the same day, by going to my stand-alone surgical center. If I had to go to an emergency department, where I’m one of many anonymous patients, I would probably be admitted, have a procedure performed to give temporary access to receive dialysis treatments, and have to wait for the hospital to schedule my vascular access procedure. At a freestanding vascular access center center, I could be done in three hours and return home the same day, ready to do a dialysis treatment.

The average cost of care at my freestanding vascular access center is approximately $4,000 per visit, of which Medicare pays a contracted fee. A similar procedure in the hospital costs more than $14,000 — excluding surgeon and anesthesiologist fees — depending on how long the hospital stay lasts and what care is delivered there. Additionally, data show significantly better outcomes in the physician office setting, including 38 percent fewer infections, 13 percent fewer hospitalizations, and 4 percent lower annual mortality rates compared to hospital-based outpatient care. The Medicare Physician Fee Schedule (PFS) regulation reimburses physicians and other practitioners for the care they provide to Medicare patients under the fee-for-service Medicare program. Contained within the PFS is a provision called  “budget-neutrality.” In other words, it means when CMS increases payment for one item, it results in an equal decrease in other items. But the problem with PFS budget-neutrality is that it “budget-neutralizes” the high-tech supplies and equipment needed to perform dialysis vascular access procedures with other unrelated services such as the professional fees that a physician is paid in the hospital.

Medicare’s cuts to vascular access services and other office-based specialty care providers could take this choice out of the patient’s hands. Closing freestanding vascular access centers  or cutting services would force me and thousands of other in-center and home dialysis patients to seek care at our local hospitals, something that is riskier to our health, disruptive to our lives and, for many, unaffordable. In addition, with COVID-19, many procedures in the hospital setting were canceled, which left many people without access to proper care.

I have already felt the effects of this reduced access to care. The routine care and management of my fistula was happening without issue at my local vascular access center until it suddenly closed its doors in February.

While specialized office-based vascular access performed by medical specialty providers is beneficial to both Medicare and Medicaid beneficiaries and total program costs, it makes these providers vulnerable to volatile reimbursement rates. The 2022 Physician Fee Schedule is yet another round of huge cuts to reimbursement for the same key vascular access code already cut by 39% in 2017. If these new cuts are not reversed, they will likely cause another round of center closures and further threaten access to care for half of a million people who do dialysis either in dialysis centers or their homes. A 2018 survey by the American Society of Diagnostic and Interventional Nephrology found that reimbursement levels were so low after the 2017 cuts that more than 20 percent of respondents (dialysis access physicians) stated that their centers had closed due to the cuts. 

As someone who depends on dialysis and who represents others through Home Dialyzors United, I urge CMS to work with Congress on fundamental reforms to the Physician Fee Schedule and reverse the clinical labor cuts to office-based specialists. These proposed changes would force medical specialty providers, including vascular access providers, to cease operations, leaving patients with fewer options. 

Nieltje Gedney is the executive director of Home Dialyzors United.