Finding out the TRUE cost of a lung transplant to NC Medicaid...?

WinAce

New member
Hi there. I'm appealing their latest decision to turn me down, and one of my arguments will be that it's probably going to be cheaper to pay for a lung transplant, one time, than vainly trying to extend my life with tons of hospital stays, antibiotics, miscellaneous CF treatments I wouldn't need post-transplant, and the like.

However, Medicaid--like any insurance company--negotiates a lower rate with hospitals and service providers than the stated rate for self-paying patients. (That's right, in case you didn't know, patients who have to, say, mortgage a house to pay their bills, or go into bankruptcy, have to subsidize those with insurance, who often receive services at a loss to the hospital through clever negotiation and dirty tricks unavailable to the layman. All praise the invisible, blood-stained claw of the free market! Allahu Ayn Rand! </sarcasm>)

Due to the above, I can't just go quoting the published rate for a lung transplant, and the published rates for those services. For all I know, a transplant might need to be paid almost in full, while hospital services are heavily discounted--defeating my argument, and making it indeed cheaper, for Medicaid, to keep me barely-alive as-is instead of paying for a recovery. If that's the case, I should hardly empathize the fact in an appeal <i>for my side</i>. But, how do I go about finding the true rates?

I called Medicaid, and they stonewalled, saying they don't release that info to patients. I called UNC, and they seemed equally freaked out, telling me to call Medicaid. The lady wouldn't even refer me to any other department that had that info, or might be of help in finding it. She seemed hostile to the very idea I might want access to the information of just how much Medicaid pays them. (Geez, it's not like national security is at stake)

Perhaps, however, that was due to my question about receiving a discount larger than the one they're willing to give. I asked her, point-blank, if she'd prefer the hospital to break even with Medicaid (or even take a loss), or receive what Medicaid would pay them, <b>plus</b> a hefty bonus on top (still not as much as they'd quote for a private patient) if I personally raised the funds. She couldn't reply to that, sounded extremely stressed (are they under legal obligation never to reveal that info?) and said she'd get back to me.

I called Medicaid again, and spoke to several levels of grunts before I realized it would likely be fruitless. I'll try again today, but I'm beginning to suspect that info is not easily available. But why? Surely it must be out there, somewhere. The legislature, for one, <i>must</i> have some kind of access on where the Medicaid money is going, at least. Could the Freedom of Information Act be used to obtain those numbers? (How quickly?) Does anyone know any tips for getting hard-to-find government data that they don't necessarily want you to have? Are there any legal issues to finding out how much Medicaid reimburses providers for a service? What's the deal, basically?

My main argument, of course, would be that (to all appearances) they shamelessly lie, hypocritically ignoring their own guidelines, when inventing "contraindications" that aren't even listed there. I just hope to convince them that such lying isn't even well-suited to the goals they might think it serves. <img src="i/expressions/face-icon-small-smile.gif" border="0">

By the way, someone (possibly from this very board) reported my comment, somewhere (I haven't been able to find it, but recall making it) to the effect of <i>"They're arguing a lung transplant--the only thing that can save my life--is an unacceptable risk to my life. Can I advocate 'National Strangle a Bureaucrat Day' yet?"</i> A UNC psychiatrist interviewed me, saying someone mentioned it to them because it was a "terrorist comment." The doc looked for that comment on my blog--where I didn't make it--and didn't find it, instead observing a statement from me (replying to someone who wished deadly lung illness on the Medicaid folks) that I didn't wish them any harm. After finding it, he concluded that I couldn't reasonably be plotting their demise via pipe bomb.

So, to whoever the person is who took my joke as a serious threat, I say: You, sir or madam, are the reason microwaveable TV dinners have "Remove plastic before eating" warning labels.

Sincerely yours,
--Abu Musab <i>Allan</i>-Zarqawi, "Internet terrorist" of the <a href=http://www.save-allan.org/wpblog>Save-Allan blog</a>
 

CFHockeyMom

New member
Or my personal favorite, "Caution: Coffee may be hot!". I freakin hope so!

I can't believe someone on here has absolutely nothing better to do with their time than to "turn you in"? <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

It would seem that the information you're looking for would be available to the public since it is obviously the public that funds Medicaid. You may be right in that Medicaid is just another government scam full of hypocrisy. Maybe a lawyer who specializes in Medicaid could point you in the right direction or even have access to the info. Other possible routes could be the media or contacting your local politicians? Would there be a nurse or Dr. at your CF clinic that might be willing to help you out? You know, maybe they can help you get the info on the "down low".
 

anonymous

New member
Dear Winace
I have read your website and although i do not agreee with your few on alot of things and i cant stand how negative you can be, My heart still goes out to you, I do agree that maybe you should contact your politicains and go public with your situation. I did email President Bush regading your life and your situation, I really, truly hope and pray that our country will do something to take care of thier people that are sick and dying. I personally do not have CF but i do have a child with this disease, we try to stay positive about this illness, and my child has much faith in the Lord Jesus Christ and that is what gets us through all of it. I think that you need everyone you know to stand beside you in what you are doing and let the whole world know that you need LUNGS!!!! I am still praying
 

EB24

New member
I also feel like you are getting the raw end of the deal. On the other hand, it seems as though you are very intellegent and surely you know that you are probably p*ssing in alot of people's cherrios. While what Medicaid is giving you the run-around (even though we pay taxes for exactly this purpose,HELP) there are just some things you are not going to get an answer to. I highly doubt you will ever get an answer about the transplant cost and Medicaid discount. Do you know what kind of stink that would cause if people found out they are once again getting hosed so the government can make money? My advice and I am unaware if you have gone this route, is find a public attorney who is willing to help you. This would make a highly public fuss. The (insert sarcasm)ALL GREAT AND KNOWING GOVENMENT(end) denying a chance and a far cheaper expense at life for a young, intellegent person such as you over a bug that you would in turn be ridding yourself of with a transplant. How rediculous. Anyone can see the obvious choice here. I suspect that just as Medicaid did with denying SocialSecurity they are putting you off hoping you will die in the meantime. That is harsh but it is the truth we must face. I HOPE and PRAY you get what you need.
Sincerely Eric
 

EB24

New member
Also, have you looked into the transplant center in Pittsburgh? I also have B Cepacia and when I was considering a transplant that was where I was told I would most likely get the best care. Surely my doctor told me this knowing the Cepacia factors.

Eric
 

anonymous

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Dear Winace

. I did email President Bush regading your life and your situation, I really, truly hope and pray that our country will do something to take care of thier people that are sick and dying.<hr></blockquote>


LOL. Thanks, thats the best laugh i've had all day. LOL
 

Mockingbird

New member
Now, now, let's not get into a political arguement. =-) (Though, I myself have to admit if President Bush did get involved in WinAce's case for any reason, it would more likely have to do with him taking the "strangle a Bureaucrat" comment as a terrorist statement as well. =-)
 

EB24

New member
Allan, you better keep an eye out for secret service. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

ReneeP

New member
WinAce,

I recently had a fight with Medicaid myself and I absolutely hate our medical system in this country... I sympathize with you (though I know that doesn't help you one bit). I wrote an e-mail to the Office the Ombudsman for Medicaid in my state and it was amazing the immediate response I received. I had been fighting for weeks to get so much as a call back and couldn't get one until I e-mailed my complaint. I had a phone call the morning after my e-mail was sent. I went on the website for TX medicaid and got the link to e-mail the Office of the Ombudsman. Granted, my situation wasn't as dire as yours is. My daughter needed sinus surgery, not a transplant, but it's certainly worth a try to see if you can at least get someone at a high level interested in your case.

As far as the amount medicaid pays for medical services, that should be a matter of public information. The hospital should be able to tell you exactly what medicaid will pay for a surgery. They absolutely have that infomation. There is no question about it. It's not as though they've never billed Medicaid for a transplant before. I worked for Blue Cross Blue Shield of MN for several years and we had "allowed amounts" as well. I never knew what the allowed amounts were because I wasn't involved in billing, but we always had our customers call the drs or hospitals to find out and they always told them. How can they withhold that information from a patient? I'd keep after the billing department at the hospital on that particular issue. They will know more than the Medicaid workers will about the amounts. I wish you the very best.
 
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