In 2013 my son was diagnosed with ESRD at the age of only 23.  Once diagnosed, we had to make many decisions in a very short period of time.  They included preparing for dialysis, choosing a dialysis center and type of dialysis, training for home hemo dialysis, starting dialysis, surgeries, medication management, ordering of medical dialysis supplies, getting on the transplant waitlist, searching for and ultimately finding a non-related living kidney donor, signing up for social security income, understanding and signing up for Medicare and Medicaid, understanding how Commercial Group Health insurance, Medicare Advantage plan, and Medicaid all work together.  Then post-transplant, a whole new set of issues faced us, like continued medical follow up, medical testing, immunosuppressive medications, social issues, and my son finding a job.

When he was diagnosed my son had coverage under our Commercial Group Family Insurance plan in Pennsylvania.  We had a good primary care physician that we wanted to retain as the controlling entity in our son’s care.  This doctor was “core” to guiding and overseeing the medical needs of our son.  It was important to us to remain in the network where our primary care physician was located.  The physician was a participant only in one of the insurance networks in our area, dictating where our medical insurance coverage had to remain.

In a few short years, the Commercial Group Family Coverage was going to go away as my son aged.  A Medicare Advantage Plan within the same health care network was imperative.  The key here was “securing” the Medicare Advantage plan.  Typically, Medicare Advantage plans exclude members with ESRD.  You see, our situation is unique. The ability to secure our Medicare Advantage plan was solely the result of my son already having insurance coverage with the same healthcare network. The network administrator allowed migration into the Medicare Advantage plan within the network because we were already there through the Commercial Family Group Insurance Plan.  So when we signed up for Medicare, we specifically requested the Medicare Advantage plan.

Our experience with the Medicare Advantage Plan:

Since securing the Medicare Advantage Plan our experience has been terrific.  We found excellent physicians easily within our list of network care providers.  In fact, the customer support offered through the Medicare Advantage Plan is better than that given through our Commercial Group Family Coverage plan.  We found the health care customer service representatives with the Medicare Advantage plan to be better trained in answering questions related to care and billing than those on the Commercial Group Coverage Plan side of our insurance.  The Medicare Advantage plan has definitely been a welcome cost saving decision for my son because of the many added extensions in coverage offers.

How he has made use of the additional benefits?

There are myriad benefits contained within the Medicare Advantage plan.  We learned of these services through the membership booklet provided to us at the time of enrollment.  The health plan customer service representative was extremely informative.  Many times the representative located the providers and services for us.  They conducted the outreach and arranged for providers to contact us.

We have enrolled in a health club—it is free and offers skilled personal training which recognizes the limitations of being an ESRD patient.  Our son has also used the dental and vision care coverage offered through the Medicare Advantage plan.   Prescription medication coverage has been essential and the Medicare Advantage plan benefits are great.  He has had no issues with securing and paying for his medications.  The plan has made it easy and convenient to use their services.

 Barriers at transplantation or trouble accessing in-network providers?

The reason our primary care physician is able to successfully manage and oversee the care of my son is the health care network uses an electronic information portal.  All doctors, hospitals, laboratories and even the patient can share and view data.  The only exception to this was while on dialysis, even though our dialysis center and nephrologist were considered “in-network” providers, they were not on that electronic system for medical record sharing.  To compensate, each month the caregiver (me) would fax an update of lab results and clinic visits to the primary care physician which would then be scanned into my son’s electronic file and thus viewable by all parties involved with his care in our Medicare Advantage Plan network.  Additionally, the primary care physician’s office was located in the same building on the same floor as the nephrologist’s office and they communicated on a regular basis regarding my son’s progress and care.

The other concern we experienced was being able to wait list at multiple transplant centers.  Being in a Medicare Advantage plan, we had to accept the limitation of using only the doctors and facilities within our network of care.  Many people might find this a true barrier to finding their “gift of life” transplant. We accepted this requirement. Luckily, we reside in a large metropolitan area and with a good Medicare Advantage Plan Network, so we had no trouble in gaining access to in-network providers.  Our primary care physician played a key role in seeing we were provided with top notch medical care.

While Medicare Advantage plans are not all equal and may not be the best choice for every ESRD patient we are happy with our decision to enroll our son in this plan.  We hope other dialysis patients will have this option in the future, which is why we support the ESRD Choice Act (H.R. 5659).

About Bobbie Reed

Bobbie became a Kidney Advocacy Committee liaison after her eldest son, Alex, was diagnosed with ESRD shortly after graduating from college in 2013.