Rejected by transplant center due to no insurance...grrrrr!

[Willis]

Bastards... 

I've been waiting almost four months to hear back from the transplant center to start the whole process of getting on the list, etc.

Today I found out they had rejected me (and never bothered to tell anyone) because I don't have insurance. Now it pisses me off that not having insurance even makes a difference since I will be on D soon and likely getting either Medicare or VA years before I could get a donor kidney. But nevertheless, I am part of a benevolent association that will cover transplant surgery...but it's not legally "insurance" and I can't claim it is. It's just that I don't have "insurance" when it comes to any bills that don't involve hospitalization so am mostly pay-as-I-go for most medical bills. This association covered my wife's $70,000 heart bypass bills a few years back so I know I can pay when the time comes.

Now I should give 'em holy hell but that would probably just give them another reason to say no... 

 

[WishIKnew]

VERY frustrating!!!!!

[willowtreewren]

The day that Carl went in for his initial evaluation for getting on the list he was back at school after only a couple of hours! I was happy that it had not taken very long, until he explained why.....

The social worker just flat out told him that he would not be considered for the list because he did not have prescription coverage. 

That was an August day at the beginning of our school year and about 10 prior to his actually starting dialysis. His nephrologist was working on getting a pre-emptive transplant for Carl.

But this is the reason we did not have prescription coverage: As employers who offered insurance coverage for our employees, we had done a cost analysis between how much it would cost to pay for prescription coverage for all our employees as opposed to the anti-rejection meds for a year. It would be WAY cheaper to pay for the meds than to pay for eveyone's coverage (as a group, we all had to have the same coverage).

Well, as it turned out this social worker was mistaken! But it took us 8 months to get the error fixed!  It was not until the following May that Carl was able to get on the list.

We even offered to put enough $ to cover the meds into an escrow account, but this SW would not allow him to even entertain the idea of letting him get listed. ARGH!!!! 

I truly understand your frustration. 

I hope you can get this straightened out.

Aleta

[Jie]

The social worker should be used to do their real job: helping patients, than used to a guard to screen patients. Insurance problems should be dealt with by financial coordinators. It seems many transplant centers use the social workers at the wrong way.

[okarol]

This is why I keep saying, don't wait, call them.
We did the same thing, patiently waited for 4 months, only to find out they "were between transplant coordinators."

[gothiclovemonkey]

heh i finally got the guts to ask about transplant, 2 weeks ago, and nobody has done a thing. every treatment, i mention it, and every treatment it gets shrugged off... Oh, ill let her know, Oh ok, ill be right there, Oh... blah blah, and they never do anything.
it took me a long time to get the guts to even mention it, now i want it!

I eally hope this works out for u. im sorry we all have to deal with this bs.

[Willis]

Response from the transplant center...if you don't have insurance they require $15,000 cash up front and $250,000 bond before they will even start to process an application.

Uhhh...I guess they are hoping I will die before I get on dialysis and medicare and thus one less sucker to worry about? Like I said...bastards... 

 

[Chris]

heh i finally got the guts to ask about transplant, 2 weeks ago, and nobody has done a thing. every treatment, i mention it, and every treatment it gets shrugged off... Oh, ill let her know, Oh ok, ill be right there, Oh... blah blah, and they never do anything.
it took me a long time to get the guts to even mention it, now i want it!

I eally hope this works out for u. im sorry we all have to deal with this bs.

gothiclovemonkey, just bypass your center and contact a transplant center, that's what I did. My center didn't even tell me they stopped taking blood samples for my transplant clinic which pissed me off. So best to talk with a transplant center and your neph (which I did not do) during an office visit to get things rolling.
 
Willis, that is very odd for them to take this long. I guess each center is different with this about insurance. When going through the evaluation, it was on their questionaire about what type of insurance you have, how you plan to pay for medications and then you meet with the social worker to go over options and what they think.
 
The problem I have found out is that the social worker does not know all since they never had to deal with a specific area. You may have to fight/ inform them to get accepted, but if they had a problem in the first place, they should have told you up front.

[Beth35]

When I went for my transplant evaluation they told me that they would not approve anyone unless they had insurance.  If they had medicare they also have to have a secondary insurance to pay for the twenty percent that medicare does not cover.  So I said, "So if you don't have insurance you don't get a transplant?"  And the SW looked at me and nodded yes.

[rsudock]

When I went for my transplant evaluation they told me that they would not approve anyone unless they had insurance.  If they had medicare they also have to have a secondary insurance to pay for the twenty percent that medicare does not cover.  So I said, "So if you don't have insurance you don't get a transplant?"  And the SW looked at me and nodded yes.

that is the problem having healthcare for profit in America!! Good gawd I think of all the people who never get the chance to have a transplant...breaks my heart....

xo,
R

[Sax-O-Trix]

It was made very clear to me that insurance coverage trumped all for a transplant...  Thankfully, I was/am working and have private insurance.  I am waiting to start getting the statements from the insurance company stating how much the hospital charged and how much the insurance company was contratually obligated to pay.  I will not be charged the difference, so the "real" numbers of charges v.s. payment by insurance should be interesting...

There is something just not right about denying people transplants who have the means to pay (cash, Medicare, co-ops, etc.).  I guess they are just trying to make sure they don't transplant someone only for that person to lose the transplant because they can't pay for the meds afterwards.  A financial person in addition to the Social worker on the team came to talk to me about co-pays, travel costs and the like.  I had to state I had the funds to cover them.  Simplistic, I know...

[jbeany]

The first question the transplant coordinator asked me when she called to say they might have a kidney for me was "Has anything changed with your insurance coverage?"

[Chris]

Sax, I remember seeing my statement for my transplant, WOW!, but second stay one week post discharhe was more than he transplant.

[Willis]

Just in case anyone's interested, here's a link to Christian Healthcare Ministries (http://www.chministries.org) which I've belonged to for almost 20 years when I first started my new business and couldn't afford or get regular health insurance. I'm scheduled to get my fistula surgery on Apr 20th and CHM has already been negotiating with the hospital. During my pre-op processing yesterday the hospital told me they were giving me a $13,000 discount because I'm legally self-pay but backed by CHM. This organization also paid for my wife's heart bypass surgery about 15 years ago and almost the entire cost was covered. I expect the same for my fistula surgery.

Now, perhaps after this is all paid for, I might be able to talk sense to the transplant center... 

 

[Chris]

If CHM is negotiating price, I can see why the transplant center says no since insurance companies do things differently and the way Medicare and Medicaid work.
However, keep trying or try a diferent tx center. If they have pissed you off this much, think of how it might be in the future with them. Best to start over with a new place using what you have learned from current center. That way you can lay everything out in line so they can either work with you or deny you right there and then instead of waiting.

[Willis]

I don't think the tx center has even talked to them yet, but as for negotiating being an issue...it's just something that all doctors and hospitals do because I've been negotiating discounts on my own as a self-pay for almost 20 years. What hospitals charge is pretty closely monitored by the government and most would actually give bigger discounts but can't go below the Medicare/Medicaid rates without facing penalties. Most medical charges will be like a "MSRP" rate and they WILL charge that if they can get away with it. The insurance companies have staff people devoted to auditing bills and negotiating rates down so I don't see why CHM or me as a self-pay should be any different.

 

[lou]

Hi Willis, just reading this thread and feeling so frustrated for you, really hope you get this sorted soon.

I have got to admit although I LOVE the USA (I spent 3 months at Eastern Michigan University and did a road trip from San Dieago to Toronto just before I started dialysis) your health care system does terrify me. It just feels like when you find out you're ill or need treatment that's enough to worry about without having to also worry about the financial implications of everything. I know I dont know enough about how your countrys health care works but I just think its horrible seeing so many people worry about the cost of everything and whether they are covered for things.

Anyway I hope your situation gets sorted very quickly and then you can just focus on looking after yourself. take care 

[M3Riddler]

Bastards... 

I've been waiting almost four months to hear back from the transplant center to start the whole process of getting on the list, etc.

Today I found out they had rejected me (and never bothered to tell anyone) because I don't have insurance. Now it pisses me off that not having insurance even makes a difference since I will be on D soon and likely getting either Medicare or VA years before I could get a donor kidney. But nevertheless, I am part of a benevolent association that will cover transplant surgery...but it's not legally "insurance" and I can't claim it is. It's just that I don't have "insurance" when it comes to any bills that don't involve hospitalization so am mostly pay-as-I-go for most medical bills. This association covered my wife's $70,000 heart bypass bills a few years back so I know I can pay when the time comes.

Now I should give 'em holy hell but that would probably just give them another reason to say no... 

 

Willlis,

Speak with your social worker...There are programs out there for those in your circumstances....The social worker should be able to help you or at least refere you to someone who can help...Are you on Medicaid?
I know someone who was in a similar situation where they did have insurance, but the transplant center did not accept the particular type... They had to be listed in another city/center.....but were able to be listed an did receive a transplant.....

///M3R

[Willis]

I appreciate all suggestions and the support.

But...my problem is that I'm stuck solidly in the middle class at the moment. Should I choose to just blow whatever little savings I have left, quit my job and go on disability then I'd be in a better situation. See...they say I make too much to get any gov't support and that I have the means (according to their scales) to buy insurance. The problem is that both my wife and I have pre-existing conditions that make us uninsurable. That was true when we joined the organization I mentioned above but because they had reasonable guidelines for pre-existing conditions we were able to at least join that program.

I'm fortunate that Medicare (for now) will be able to cover most of my care but after looking into the Part B and Part D plans it's still going to cost a LOT more than the association I belong to now. So I guess I just need to be patient and wait until I'm officially on Medicare and on dialysis and then worry about the transplant process then.

I'm also in the process of registering with the Veteran's Administration but because my kidney failure isn't combat related the coverage is quite limited. (My former comrades who lost limbs and suffered TBI need the VA's money and care a lot more than I ever will. I do not begrudge them for a microsecond!)

But again, thanks for all who have responded--and those who did not but have "listened" patiently--and to all who understand how aggravating these things can be!

 

 

[emma67834]

Willis, I know how frustrating it is about trying to get on the list. My husband had his fistula put in last September and we spoke with the transplant unit that his surgeon recommended. We were told he had to have insurance. We got him Medicaid(Medically needy with a spendown of $13,000 every 6 months), yes that alot but since he gets disability and I work $10.50 an hour thats what they say his spendown is, any way we got that and then they told him he would need medicare. So, in December when his Medicare kicked in they tell us he needs a supplemental insurance in order to start testing to be put on the list. I contacted BCBS and they tell us that due to his medicaid he probably cannot get any supplemental insurance from them or any other company. This is all so confusing. I hope that yours goes easier than ours has. Hopefully by us both using this website, maybe we can get some direction on how to help you out and my husband.

[Chris]

emma, something doesn't seem right and maybe the social worker is an idiot? I have medicare and medicaid with the spend down of course and I had my transplant. Are they trying to test people on how hard they want a transplant?

[Sax-O-Trix]

What is a "spend down"?

[Cordelia]

I'm so sorry to hear of your situation. 

Here, in Canada, where I'm from, healthcare is paid for. If/when I have a transplant, I won't have to pay a cent for the surgery.

[emma67834]

Chris this was the tranplant unit coordinator that told me this. I thought it was weird too.  Sax o Tax, a spendown is when you supposedly make too much money for the state to give you insurance for free and the spendown is what your financial responsibility is. It's kind of like a deductible.  I am just very frustrated with all of this hoopla that my husband has to go through just to get a transplant. It should not be this way in this country.

[Chris]

Even with SSDI I make to much and have to meet a spend down of $289 a month to have Medicaid coverage. They raise it every year and I haven't had a pay raise in years because the gov't say's cost of living hasn't gone up (B.S. I say, guess the do not go shopping or have an aparentment)