Lori Hartwell

Patient choice has always been the cornerstone of my beliefs. In 2016, Congress decided that people who are eligible for Medicare due to a diagnosis of End Stage Renal Disease (ESRD) would become eligible to enroll in 

 (MA) plans beginning January 1, 2021. MA is an option under Medicare to receive coverage through a private company that contracts with Medicare to provide plans offering Part A and Part B benefits. Most MA plans also offer prescription drug coverage under Part D, and they can offer services not covered by Medicare, plus improved care coordination.

When MA plans were first signed into law in 1997 (first called “Medicare+Choice” and renamed “Medicare Advantage” in 2003), Congress decided it was best to prevent people on Medicare due to ESRD from enrolling in these plans, due to concerns that inadequate networks could lead to serious health issues, or even death, for this population. For example, if a person with ESRD needed a vascular access repair to receive dialysis but no doctor in the network was available, the person would have to get very sick and be admitted to a hospital to have a chance at lifesaving treatment.

MA plans don’t require secondary payers; therefore, these plans can offer additional benefits (such as access to a dentist) at reduced costs. Enrollees are often required to pay a co-pay for the service. Insurance companies contract with providers and negotiate fees. The downside is that people enrolled in MA plans are in a network of providers that may require authorization to see a specialist or get a test. Before signing up for a managed care plan, it is recommended that the beneficiary ensure that the doctors they need to see, and the medications they are currently taking, will be offered in the plan.

Much to my dismay, and to many kidney care advocates, the policy that was intended to help—opening up ESRD enrollees to MA plans on a broader basis—can actually be harmful.

Specifically, CMS has decided to eliminate a longstanding policy that required MA plans to include a minimum number of dialysis facilities and establish time/distance standards (known as network adequacy standards) that are designed to give people access to life-sustaining dialysis treatments. The network adequacy safeguard was put in place to protect patients from joining plans that would restrict their access to adequate care for a serious illness. With no network adequacy, nor the ability to see beforehand which facilities participate in the MA plan, I don’t know how someone who needs access to dialysis could make a choice without potentially dire consequences. It will equally be important for plans to be transparent and list transplant centers, as well. A patient can be listed and ready to receive the gift of life and then enroll in a managed care program and learn their transplant center isn’t an option. This would require the person to go through the entire screening process again.

Most people with kidney disease need dialysis 3 times a week, and in the MA plan they may have to drive across town for treatment, or further, even if one is closer to their home. People in rural areas will have even more issues with distance. Even those who do home dialysis require in-center treatments from time to time, and they rely on either public transportation, healthcare transport companies or friends or family members for help.

This new policy does not expand patient choice; it hinders it and puts a blindfold on it.

Not knowing if you will be able to continue your care with the same trusted doctors and clinicians you have counted on for years seems cruel. Other Medicare beneficiaries are not being asked to make such choices.

Congress has mandated expansion of a choice to enroll in MA plans to everyone with ESRD. Continuity of care is central to the long-term treatment of someone with a chronic illness that requires serious maintenance. Unfortunately, the intent of Congress to expand choices to those with kidney failure is being foiled by this unfortunate regulatory blunder that needs to be rectified immediately.

Patients who are drawn to the additional offerings that an MA plan might afford them will see what and where they can get care only after they sign on the dotted line. What will they do if, after they enroll in an MA plan, they find no in-center facilities in their network, or that the only facilities available to them are too far away to be practical? After all, they may need treatments 3 times a week!

In this scenario, I believe people who require life-saving dialysis will fall through the cracks. They will either have the unnecessary burden of becoming entangled in red tape trying to undo their MA plan enrollment—or worse—they will give up because of the burden.

This new regulatory approach needs to be reconsidered so that people who need dialysis know upfront whether an MA plan will allow them to continue to see their own doctors and receive treatments at their preferred facilities. People dialyze to live. They should not have to travel great distances or get caught up in the fear of not having access to lifesaving care because an MA plan did not provide them the choice.

A pioneer in kidney care, Lori Hartwell is founder and president of the 

. After requiring dialysis at age 2 in 1968, she is now doing well with her 4th kidney transplant, having spent thirteen years on dialysis. Hartwell works to help her peers navigate care and remain hopeful. She lives in Glendale, California.



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