ESRD, Medicare and lost employer health plan will cost my wife her life

benromana

New member
It looks like we made a huge mistake and my wife lost coverage through my employer plan and can't get back on Medicare. It will likely cost her her life.

My wife was diagnosed with kidney failure and went on dialysis in 2021. The kidney clinic suggested it would be cheaper to sign up for Medicare because the premiums would be cheaper than the deductible for my employer group health plan. So we went on Medicare in 2022. I paid premiums but my employer health plan continued to pay claims. When I asked why, they told me the group plan was the 'primary' player and Medicare was 'secondary'.

My wife ended up getting a transplant a few months later luckily. I paid Medicare premiums for another year or so and they never paid any claims. We felt like it was a waste of money. I finally submitted a form to cancel Medicare. This was our critical mistake but didn't realize it at the time.

This year, the employer health plan started denying claims saying: 'Member is eligible for Medicare Part B but does not have Medicare Part B'. I thought it was a mistake and called them. They said, no, my employer plan was primary and to have providers resubmit claims.

Last month, my wife was diagnosed with liver and kidney failure and began dialysis again. She was approved by another hospital for a liver transplant. We waited for 2 weeks for a final go-ahead. The delay was due to insurance we finally found out. In reality. Medicare switched to 'primary' after a 30-month 'coordination period' and the employer plan started denying all claims. since we don't have Medicare Part B. The hospital suggested she enroll in Part B again. We tried. Normally, dialysis is a valid reason for immediate enrollment but because we cancelled last year, we were denied. We continue to appeal to the employer health plan but they just give us the run around. Sometimes they even say they are primary payer again - only to find out that was incorrect later. It's so frustrating.

The rules and process have become more clear now - after many frantic hours of research and phone calls. My wife has continued outpatient dialysis for the last couple of weeks but now that it's clear that she's not covered, she'll probably have quit to go on hospice. I feel so stupid. My wife will pass and we'll be saddled with outrageous bills. This feels like a nightmare I can't wake up from.

---- Update 5/28: ----

Some improvement in our situation but so much else is the same. Luckily my wife has improved to the point she is off dialysis for a couple weeks now. She's still pretty fragile and requires frequent blood labs. We're still desperately trying to find some insurance coverage so we can start with the transplant process. Each blood lab and doctor visit adds to the piling debt though.

Our Senator's office put us in touch with the local Social Security office but they said nothing could be done and my wife could not reenroll in Medicare Part B until Jan '25. Out employer plan also responded to our appeal to claims and said they will not cover anything (starting Jan 1 '24) since my wife was eligible for Medicare Part B - even though she doesn't currently have it.

One insurance broker suggested having my employer cancel her coverage which might allow her to enroll in Medicare but I'm doubtful and trying to find a straight answer from someone who knows is difficult. I'm waiting to hear back from our local Social Security office.
 
@benromana 1)I’ve had someone call SS and they reinstated part B after they paid the back premiums. This was when it was cancelled 6months ago.

2) Since she started dialysis again, she should send an ESRD Medicare app and new 2728 and that should qualify her to get Medicare Part B.

3)The EGHP insurance should pay until she gets Part B. Show them the proof she was denied. Complain to the Dept of Insurance.

What is her dialysis center saying? They aren’t getting paid either by Part B. Surely there is an Insurance Counselor there that should be helping you.
 
@joppyldw Great suggestions. I asked about paying back premiums when we tried enrolling at the SS office. The clerk said no but I should appeal and ask someone higher. I did contact my Senators and Congresswoman.

I can also reach out to the Dept of Insurance. The finance and insurance councilor at the kidney clinic have been out the past few days but previously, they did recommend I go to the SS in person and apply and ask if I could pay back premiums.
 
@benromana Reach back out to your congressman and follow up in person with ss. Congressmen love doing these things for their constituents mention your concern of having to give up and go on hospice. Apply for medicaid as ESRD is a qualifier for them as well. She needs to keep going to dialysis, do not stop. People fuck up their medicare all the time it can be straightened out I promise.
 
@joppyldw I work with Medicare and this looks correct to me.

You could also reach out to the American Kidney Fund for help with premiums. Often, I see AKF pay for a Medigap Plan G. This may be the cheapest route for her healthcare.
 
@prestodabesto Have you seen people able to reinstate Part B? I got off the phone with Social Security and they said to fill out form 795 and list the back date and reason. Again, this is because we cancelled Part B, not for nonpayment
 

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