My 30 yo daughter has ACA insurance with a small carrier. She has an eGFR of 18 so she may be able to hold off dialysis or she may need it soon. The carrier only has one in-network transplant center and the average wait time is 39 months. The insurer told us they would not sign a "single case agreement" with a second clinic with a shorter wait time. It feels as though our hands are tied.
Does anyone else have an insurance carrier that offers only one transplant center? Any suggestions?
Thank you
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Calypso_22
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You need to go to an insurance broker. They do not charge to you to find a better insurance that will cover you where you want to go. Eventually she will get Medicare.
Thank you so much to Bassetmommer, Darlenia, and Barbara55109 for your time and thoughts!
Yes, we are trying to get her on the transplant list at the University of Utah as quickly as possible. Her doc submitted the referral in mid March and she still does not have a date to go for initial review. And... their average wait time is 39 months.
I have gone to both a local commercial insurance broker and the local healthcare navigator sponsored by the Montana Primary Care Association. They are both trying but running into the same roadblocks I am determining a plan to switch to in 2025. I think the private broker will be lots of help when he looks for a Medicare Advantage plan. According to the online healthcare.gov tool, none of the 15 transplant surgeons I searched for at the 4 closest centers are in-network for any Blue Cross PPO plan. I doubt that is the case.
I've spent about 12 hours on the phone with Blue Cross Shield of Montana and gotten absolutely nowhere with them. I get shunted off over and over, cut off... finally, someone that seemed to understand and "What? You are in Montana? I can only answer questions about Texas plans" ???!!! All the clinics and hospital staff say they can't tell me what plans are in-network and I have to go to Blue Cross of Montana.
We are in Montana. The closest transplant facility is 540 miles in Seattle. We have no choice but to travel and are trying to plan for an extended stay away.
My advice is she take advantage of her existing plan right now and get on the transplant list as soon as possible - that can be done once eGFR is 20 or less - at the center available to her now. Everyone starts at "a" center. Then, with a new insurance plan in hand, she can double-list at another center later on. I mention this because, unless she's on dialysis (a significant life event), your daughter likely won't be able to change to another insurance plan until open enrollment occurs towards the end of the year - likely months from now. She likely has the runway to complete the tests and get listed under the existing plan. For assistance in investigating other plans, her state insurance office can advise her directly or offer a referral to a reputable insurance broker. In our experience, double-listing was quite easy to do since the centers willingly shared labs and tests. In your case, the sooner your daughter is on the transplant list, the better it is for accruing time towards a "pre-emptive transplant" and receiving a precious kidney - entirely skipping dialysis. I'm glad you're being proactive for your daughter's sake. We waited too long - my hubby wound up on dialysis. Then, because our first transplant center (which cleared him for the wait list) didn't do many transplants, we double-listed at a far more active center where my hubby received his gift later! It's definitely doable.
I have employer sponsored insurance. I can go to any one of the three transplant programs in my state. I was told that transplant centers in a specific region are all offered the same kidneys - essentially you are on the same list. This is supported by UNOS materials unos.org/wp-content/uploads...
I suspect most people who are listed in multiple regions are on Medicare, not employer sponsored or private insurance. I work full time. Even if I could get insurance to pay for a transplant outside of my region it would be too far away to drive to appointments and my family would have to stay in hotel during and after transplant. There are very frequent Dr appointments right after. I don't have the financial resources to swing that. I need to keep working to keep my insurance. The region map is online. unos.org/community/regions/ There are also lots of reports on the UNOS site.
For my blood type, the wait is 5-6 years in my region. Getting on another list in my region won't increase my odds. I also don't think the other two programs in my state will list me since I'm fat. I had to fight hard to get listed at my center in the first place.
Also - please remember insurance brokers are paid by insurance companies to get you to buy their plan. Navigators are non-profit assistors who can help you pick a plan without any financial incentives for them.
Small world! I was born and raised in Bozeman, Montana, and graduated from MSU. I'll be going back soon for a family reunion. Most Montanans seem to be getting their transplants, as you mentioned, in Seattle. Also Denver and Salt Lake. So travel out of state is a given for your daughter. Here is a website that I found was valuable in comparing statistics among the various centers. srtr.org/transplant-centers.... There is also srtr.org/transplant-centers... which is run by two kidney transplant recipients. They now charge a fee if you you use them to submit medical paperwork, etc...but you can still check out their transplant map. My hubby managed to get a kidney exactly one year after going on dialysis. We did everything on our own. (I'm still convinced that, if he had started the process sooner, he could have skipped dialysis.) Truly hope everything works out regarding the insurance issue and that your daughter gets her gift soon!
It is a small world....I am a Wyoming girl..and sadly our Transplant Centers are South and West for us....with miles of Prarie between...but doable in nice weather...Love Bozeman !
Howdy! Aah, it's indeed a small world! Wyoming and Montana are sister states! It's definitely harder to get direct and fast medical care in those lesser populated states, yet some do manage to get transplants there. They probably flew out on those little planes that abound around there. Glad to know ya!
Nice to hear from you, Darlenia. Naturally, we have lots of friends in Bozeman. Yes, srtr.org is great. I found it early on. That how I know that U of Utah average wait is 39 months while U of Washington is 23!! I have not opted for the assist option yet. We have a local non-profit navigator and a local insurance broker continuing to dig, though not hopeful. It has been suggested she continue to submit applications to list at more centers and we'll figure out insurance if and when accepted. Broker suspects most private insurance patients from Montana end up with "single case agreements" between the center and their health insurance plan.
I was at Gfr 18 when my Nephrologist declared me ESRD. I was 62 and quite out of it.This diagnosis got me on dialysis and Medicare. No out of pocket expenses for treatment/monitoring.
FYI I get statements for the treatment. Average cost is $200k/Mo.
Is there any way she can change to a better ACA plan? Usually you have to wait for open enrollment but sudden health challenge may be an exception.
Most everyone is eligible for Medicare after three months on dialysis. I wan’t because I hadn’t worked enough credits, since I was self-employed. I also had no spouse who had worked.
My advice would be to pick the transplant center with the shortest list possible, that is close enough to you or a relatives house it. Patients need to stay close to their transplant center anywhere from 6 week to 2-3 months afterward depending on complications.
Below 20 GFR she is eligible for transplant list. Apply now! Anywhere she can.
Any time she is on any transplant list before dialysis is called pre-emptive time. That is bonus time you can transfer to any other center at a time, but only one. On any center’s list, your wait time starts the first day of dialysis.
My doctor had me wait until GFR 6 but I felt really sick I was angry afterward, he made me wait too long.
Many doctors will start at GFR 10.
They found an “early start” at GFR 15 wasn’t beneficial.
Of course, it all depends on her unique medical history.
Dialysis will keep you alive, but it is often a miserable life. Did you know dialysis only replaces 10% of what healthy kidneys will do? Dialysis is life support. You do not want to be on dialysis if you can avoid it.
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