shaken a bit after listing paperwork..

[tiredandthirsty]

so i am already listed at one hospital for the past one year 4 months and 10 days.  but since nothing has happened except one call in January'12, i decided to get listed at another facility.  i was hoping the process would be similar.

but the new hospital protocol for listing is freaking terrifying.  after a day long process of testing, poking and prodding, i was filling out some financial paperwork this morning and i had to call the financial coordinator regarding a few of the questions mentioned in the questionnaire.  the conversation sort of digressed and i ended up finding out that i might have to fork out 6 months worth of medication cost out of pocket as Medicare will not cover medication costs (other than immunosuppresants) if it is secondary.  what if i can't make the payments? what if i cannot afford the meds? she said the medications other than immunosuppresants can be 3000 a year! which is potentially the out of pocket i will have to cover.  my heart sank immediately and i have been shaken up since then. 

  they also asked me to bring a form of payment when called in for the surgery for the initial meds, or else they would not discharge me from the hospital.  wow!  really? it's like holding me hostage until i can pay for my medication. 

i have to provide a "plan" to pay for how i am going to pay for my medication before getting listed and stuff.  the total amount of paperwork solely dedicated to financials is 16 pages.  it has shaken me up quite a bit and i have had to put it aside because now my mind is running a million miles a minute.  is it not enough that we already have all this stress to deal with that God decides to add more?  this is so unfair.  i am wondering what kind of evil i must have done in the past life to deserve this?  i mean really.  what level of evil must i have done to deserve such a life?

[MooseMom]

Which facility is this? 

Are you on Medicare already?  Do you have private insurance?

I was listed at two different facilities, and neither of them said anything about having to pay this much out of pocket.  But payment protocols vary from center to center, I guess.  And so much depends on what kind of insurance you have already.

Don't panic just yet.  Let's take this one step at a time.  I guess the first thing to investigate is what your current insurance WILL cover.  What does your current insurance cover now?

You're right...it's the money part of all of this that is really rather debasing.  It's like no one will help you unless and until they know they will be paid. 

[tiredandthirsty]

Thank you MooseMom for writing. I appreciate it. 

Hope you are doing well and keep on doing well forever.

The facility I am trying to get listed at is Emory in Atlanta GA. 

Yes i am on medicare since June'12 and I have United HC as primary from work. 

I have been given a worksheet to fill out for each medication that i will be given (base medication that everyone receives) and I have to get the out of pocket cost from my insurance provider.  I was too scared to call earlier this morning and i couldn't find the courage to call all afternoon either.  I will make an attempt tomorrow. 

Here's something else that happened in the afternoon.  I got a call from my nurse coordinator or something from the insurance company and she said that Emory is not a center of excellence for Liver/Kidney and hence it will be out of network!  I had talked to the financial coordinator at Emory before getting tested and she had said that a contract is in place that will make it in network.  Only after her, the financial coordinators, assurance did i go ahead with all the necessary testing for the listing!  and then UHC calls me and says it is not a centre of excellence and it will be out of network!  she said i need to make sure i have something in writing from emory to make sure it is in network as she does not have most recent information.  so this is something new i have to flippin deal with.  Plus, she said that for the liver/kidney combination, Emory is not a centre of excellence which has nothing to do with financials.  she said you need to speak to them about why they are not a centre of excellence for the liver/kidney combination.  seems like i cannot catch a bloody break ANYWHERE!  i will be calling the financial coordinator and the transplant coordinator to get some of these answers.  if it is out of network, there is no way i will be able to pay for this and all the testing and poking and prodding was for nothing.  it was all a waste.  i want to scream so loud in frustration right now.  wish i had a punching bag.   

[jeannea]

What you should be getting from United is your copay costs. Your work insurance will not go away as long as you only take a leave for surgery and don't quit. Most work insurances have a range of copays. Say $5 for simple generic up to $65-85/month for a non-preferred brand name. Don't freak til you find out. You must already have a range of copays from getting your other drugs. They're not talking about you paying the full cash price unless your plan has no drug coverage.

The out of network is a little trickier. I had this with my first transplant. You can get most tests at in-network places and send results to the other hospital. They pulled that center of excellence crap with me and I ignored them. I think I had a one time $500 fee with the surgery that covered my deductible for out of network. There are also appeals that can be made. The social worker and/or financial counselor at the hospital should actually help you with this. Keep calling and asking for help when needed. Just work it step by step and you can do it.

BTW, as much as they will infuriate you, try not to yell at the insurance people. They respond better to niceties. You have to be icky nice to get what you want. Sorry.

Also, your company should have an agent they deal with at the insurance company. Try to get that person's name and number. Try HR.

[Angiepkd]

I feel your pain Tired and Thirsty!  I have United HC and am waiting for my Medicare app to be approved as secondary.  I applied prior to starting D but the center and Doc signatures took forever, so I am getting bills from DaVita.  The social worker told me Medicare would cover all of my deductible and out of pocket expenses.  I was referred back to the transplant team a month ago, but am waiting for my insurance to approve my potential transplant.  Why does it take that long for them to approve something I am supposed to be covered for?  Makes me want to scream.  I ask myself what I did to deserve this, too.  Seems like I can't catch a break.  Started D, went well, had to have my arm roto-rooted, had to have a flow reduction surgery that ruined my buttonholes, have a hernia that needs to be repaired, not feeling as good as I did when I started and waiting for stupid insurance approval to begin testing for transplant.  The final straw broke yesterday when i found out my husbands company is shopping their insurance again and are probably changing to humana on June 1st.  Whew....that felt good to get out!  Done whining now and going to move on at whatever pace I can manage.  Hope you get good news when you talk to the insurance people.  Please keep me posted, since I will be in the same boat if they ever approve me to get started!  Sorry to vent on your post!

[MooseMom]

T&T, I like what jeannea had to say.

The one suggestion I have is to document every conversation you have with Emory and with UHC.  Sounds like they're both leading you on a merry chase.  It all sounds really complicated, so if you keep notes, maybe it will help make things clearer, if that's possible!

I have never heard this "center of excellence" business.  Why does UHC want YOU to determine why Emory is not a "center of excellence" for the liver/kidney combo?  If UHC is pulling this out of their hat, why don't THEY do their research?

Angiepkd, good luck to you, too.  I hope both you and t&t get everything resolved.  I feel frustrated just reading yall's posts!

[Riki]

Holy crap.  I read something on here every day that makes me glad that I don't live in the US.

I'm sorry I can't really give any advice, but I'm available for virtual hugs if needed.

[tiredandthirsty]

What you should be getting from United is your copay costs. Your work insurance will not go away as long as you only take a leave for surgery and don't quit. Most work insurances have a range of copays. Say $5 for simple generic up to $65-85/month for a non-preferred brand name. Don't freak til you find out. You must already have a range of copays from getting your other drugs. They're not talking about you paying the full cash price unless your plan has no drug coverage.

The out of network is a little trickier. I had this with my first transplant. You can get most tests at in-network places and send results to the other hospital. They pulled that center of excellence crap with me and I ignored them. I think I had a one time $500 fee with the surgery that covered my deductible for out of network. There are also appeals that can be made. The social worker and/or financial counselor at the hospital should actually help you with this. Keep calling and asking for help when needed. Just work it step by step and you can do it.

BTW, as much as they will infuriate you, try not to yell at the insurance people. They respond better to niceties. You have to be icky nice to get what you want. Sorry.

Also, your company should have an agent they deal with at the insurance company. Try to get that person's name and number. Try HR.

Hi Jeannea.  thank you for your writing.  Hope you are well and keep on doing well forever.

I do have copays and coverage for meds through United.  but the phone call with the financial coordinator sort of just overwhelmed me.  when she started spitting out all these numbers, it was as if i was being buried into a coffin one nail at a time. 

i was super busy yesterday with work and dialysis so i couldn't do anything yesterday.  i will try to call United to fill out that drugs expense worksheet that i have to submit.  i'll have to put my kevlar on before i do that. 

[tiredandthirsty]

I feel your pain Tired and Thirsty!  I have United HC and am waiting for my Medicare app to be approved as secondary.  I applied prior to starting D but the center and Doc signatures took forever, so I am getting bills from DaVita.  The social worker told me Medicare would cover all of my deductible and out of pocket expenses.  I was referred back to the transplant team a month ago, but am waiting for my insurance to approve my potential transplant.  Why does it take that long for them to approve something I am supposed to be covered for?  Makes me want to scream.  I ask myself what I did to deserve this, too.  Seems like I can't catch a break.  Started D, went well, had to have my arm roto-rooted, had to have a flow reduction surgery that ruined my buttonholes, have a hernia that needs to be repaired, not feeling as good as I did when I started and waiting for stupid insurance approval to begin testing for transplant.  The final straw broke yesterday when i found out my husbands company is shopping their insurance again and are probably changing to humana on June 1st.  Whew....that felt good to get out!  Done whining now and going to move on at whatever pace I can manage.  Hope you get good news when you talk to the insurance people.  Please keep me posted, since I will be in the same boat if they ever approve me to get started!  Sorry to vent on your post!

Hi Angie.  vent away please.  i am sorry you are dealing with all this.  i sincerely hope it all gets sorted out soon. 

[tiredandthirsty]

T&T, I like what jeannea had to say.

The one suggestion I have is to document every conversation you have with Emory and with UHC.  Sounds like they're both leading you on a merry chase.  It all sounds really complicated, so if you keep notes, maybe it will help make things clearer, if that's possible!

I have never heard this "center of excellence" business.  Why does UHC want YOU to determine why Emory is not a "center of excellence" for the liver/kidney combo?  If UHC is pulling this out of their hat, why don't THEY do their research?

Angiepkd, good luck to you, too.  I hope both you and t&t get everything resolved.  I feel frustrated just reading yall's posts!

Thank you Moosemon for that tip.  i think it is a brilliant idea to keep notes.  i will have to start doing that. 

also, it's United telling me that they are not a "centre of excellence".  and they want me to ask Emory why they are not a centre of excellence.  i don't get that either.  United suggested another hospital in GA that they consider "centre of excellence" for the liver/kidney combo.  she gave me this link to check up on transplant statistics. i am a little confused myself. 

www.srtr.org

it seems to be loaded with reports/statistics.  everyone on transplant list or wanting to get listed should check it out.  very detailed statistics on a lot of stuff. 

[tiredandthirsty]

Holy crap.  I read something on here every day that makes me glad that I don't live in the US.

I'm sorry I can't really give any advice, but I'm available for virtual hugs if needed.

Hi Riki.  I pray and hope that you never have to deal with these imbeciles. 

[cariad]

Hi T&T, sorry to hear about all the nonsense from UHC. In my experience, they are about as evil as they come.

It sounds like the UHC agent is trying to hint that Emory is not good enough at liver/kidney transplants to be considered a "center of excellence". I remember the Center of Excellence requirement with Blue Cross, but it seemed that every center was a Center of Excellence in their view, and that the real meaning of that grand phrase was "has a contract with us". I went to the site you linked and they do not give stats on liver/kidney that I could see. 

I don't know your financial situation so forgive me if this is a rude question, but say $3000/year is the worst case scenario. That's $250/month. Is that really totally out of reach for you? I only ask because I have had to pay that much for meds before transplant (Aranesp alone was $100). Sadly, those numbers just don't sound that high to me.

I believe Emory is noahvale's stomping ground and he seems to know a lot about the program and the financials behind dialysis and transplant. Perhaps you could trying sending him a PM and asking if he has any suggestions regarding people to call for assistance with sorting this out. I wish you the best of luck.

[kit78]

Please note that after a transplant you can always go through your doctor to get meds directly from the makes at a low price or free depending on your income.  Mine for Prograf was $10.00 or mostly free.  Celcept is a bit tougher company to work with.
Just keep in mind.

[jeannea]

I agree that United Healthcare is evil. Always has been. But we're strong. Face down the devil.

Kit78 is right that there are programs. I don't know if you can qualify if you're working but I say try for any help you can get.

All this insurance stuff sucks. I want to move to Sweden.

[tiredandthirsty]

Cariad:  i initially thought the same thing.  "centre of excellence" = don't have a contract.  but i called the financial coordinator and United and after a few phone calls a contract between United and Emory was in place (at least that's what the financial coordinator told me).  I waited a full month for this before initiating the testing for the listing.  also, it is not the figure that scares me.  it's just a combination of things. when she started throwing all these numbers at me, all these thoughts started making rounds in my mind immediately.  for example:  i have a student loan payment, car payment, rent and utilities, groceries.  these are fixed costs that i am going to incur whether i have a job or not.  currently, i am bending over backwards to keep my job.  every three months i have to beg and plead for it.  that's another story i probably have posted about on here.  however, i will end up on disability one of these days and my paycheck will be cut into half.  these fixed costs will not.  and then the medication cost on top of that!!! my company may potentially give me back my position if i am on disability or away for one year or less.  after that, they may or may not depending on "business need".  which basically means i will most likely have to find another job.  stuff like this started playing out in my head and hence i felt really overwhelmed and shaken up a little. my mind once it starts going doesn't know how to stop.  i can't turn it off and i stress the heck out of myself. 

Kit78:  that is a great tip. thanks a lot.  i will definitely keep this in mind.  rather, i will make a note of this right now.  thanks a bunch.

jeannea:  can i move to sweden with you?  insurance is supposed to help the people, not add to their misery. 

[MooseMom]

stuff like this started playing out in my head and hence i felt really overwhelmed and shaken up a little. my mind once it starts going doesn't know how to stop.  i can't turn it off and i stress the heck out of myself.

My twin!
 

nsurance is supposed to help the people, not add to their misery.

You silly goose.  Whatever gave you that idea?   

[skg]

... i have a student loan payment, car payment, rent and utilities, groceries.  these are fixed costs that i am going to incur whether i have a job or not. ...

Depending on the student loan details, you might be able to get it deferred or the payment reduced. I had one through the government, and was able to get it temporarily deferred quite easily (when the company I was working for declared bankruptcy.)

cheers,
skg

[jeannea]

We'll all move to Sweden! Then I'll have someone to talk to during the snowstorms. I am NOT good at learning languages. I could prob live there 10 years and finally be able to ask what's your name.

[tiredandthirsty]

... i have a student loan payment, car payment, rent and utilities, groceries.  these are fixed costs that i am going to incur whether i have a job or not. ...

Depending on the student loan details, you might be able to get it deferred or the payment reduced. I had one through the government, and was able to get it temporarily deferred quite easily (when the company I was working for declared bankruptcy.)

cheers,
skg

hi skg, thank you for your response.

yes i do know about deferring the student loan payments.  but i have been so good since i graduated and have paid off over 50% of them and it would really be disappointing if i had to defer them.  the interest does not stop accumulating and the balance will just keep growing for the amount of time deferred.  rendering most of my effort so far useless to a certain extent.  but i have categorized this option under my "last resort" category among other things.

[tiredandthirsty]

We'll all move to Sweden! Then I'll have someone to talk to during the snowstorms. I am NOT good at learning languages. I could prob live there 10 years and finally be able to ask what's your name.

sounds like a plan.  i am good at picking up languages.  i will be your translator once i learn enough swedish.  and almost everyone in sweden speaks english.  best part about it.  i have been there :-).