If you're American and have had a transplant, please help with info!

[Chantal]

Hi all from Canada my sister passed from CF when she was 21 and I was 17 in 1990. I'm now writing a book, a novel where the lead is helping her sister obtain a lung transplant. It takes place is the US, and I have a few questions.

Are all costs related to double lung transplants covered under basic medical insurance? If not, approximately what amount would need to be raised by the patient? The people in the story are not wealthy, so only basic health insurance is affordable...Please correct me if I'm wrong, but that would be be Medicare?


What hospital or hospitals are recognized as the best covered facilities for lung transplants?

Thank you you for your time, I truly appreciate any help you can offer!

chantal

 

[Gorf]

I have learned all insurances are different. I worked for Walmart for a few years and have recently had to quit because of my health. My wife still works there. So I am still under Walmart insurance. The regular insurance is no different then most that it has big out of pockets and deductibles. The surprising factor is they pay for transplants at 100%. The only thing I would have to afford would be the drugs after transplant(some are extreme) which fall on the normal prescription plan. They pay to get me and care giver there for doc visits and testing. Spending money for food even. One draw back is I can only be listed at Mayo Clinic. They don't pay for anywhere else. This year Mayo Clinic was voted best in the US for the 2014 - 2015 years.

 

[Chantal]

Thanks Gorf! Any idea around what $$ the after care drugs come to?

 

[Chantal]

I have another question you said it was a drawback that you could only be listed with the mayo clinic. Why is this a drawback?

 

[Aboveallislove]

Also, FYI Medicare is for elderly...taught in school to remember that you care for the old, ie mediCARE and you aid the poor, I.e. Medicaid. I wouldn't describe Medicaid as health insurance, but rather as health coverage, because insurance you buy to cover a risk. Out of curiosity, why wouldn't you set in CAnada where you know the medical system and cultural factors better? I'd have no idea how to set a story in Canada. Also FYI many organizations in us he defray transplant costs.

 

[Chantal]

Also, FYI Medicare is for elderly...taught in school to remember that you care for the old, ie mediCARE and you aid the poor, I.e. Medicaid. I wouldn't describe Medicaid as health insurance, but rather as health coverage, because insurance you buy to cover a risk. Out of curiosity, why wouldn't you set in CAnada where you know the medical system and cultural factors better? I'd have no idea how to set a story in Canada. Also FYI many organizations in us he defray transplant costs.

thanks Above! Being Canadian I still relate more to stories set in the US, you guys get more coverage than we do even up here I feel like with a bit of research I can my story feel more relate able ...

 

[triples15]

Also, FYI Medicare is for elderly...taught in school to remember that you care for the old, ie mediCARE and you aid the poor, I.e. Medicaid. I wouldn't describe Medicaid as health insurance, but rather as health coverage, because insurance you buy to cover a risk. Out of curiosity, why wouldn't you set in CAnada where you know the medical system and cultural factors better? I'd have no idea how to set a story in Canada. Also FYI many organizations in us he defray transplant costs.

Not entirely accurate regarding Medicare. I am 33 and have been on MedicARE for a few years. Many CFers are on Medicare, especially those that are "sick enough" to need a transplant. While for most Medicare is only available after age 65, one also qualifies for Medicare after being on Social Security Disability for 2 years. So those CFers that have had to quit work due to progression of the disease will have Medicare (but may also still private insurance and/or medicaid). I have heard of many CFers having their transplants covered by Medicare, but I know there have always been questions regarding what all they cover and how well they pay.

MedicARE does not take income into consideration at all-it is the disability that qualifies you, whereas MediCAID is financially needs based program and one can have VERY little income/assets to qualify. So if someone has Medicare due to disability, and is also financially disadvantaged (common), they can also have Medicaid. In which case MedicARE would pay first, and Medicaid pick up what's left. To that end it is also possible to have private insurance and then some combo of the other 2. For example, I have private insurance (Blue Cross Blue Shield) through my husbands employer, and also Medicare. So in my case, my private insurance pays first, and then Medicare will kick in after that. Slightly confusing eh?

Just realizing as I'm typing this how complicated insurance/medicare/medicaid etc. are, and would be impossible for anyone to explain in a single post. So I'm gonna just stop rambling. Let me know if you have any questions about what I've said. I'm sure it's clear as mud!

I'm with Love, setting it in Canada would probably be the easier option. But if you're up for the challenge, I recommend reading a lot, asking a lot of questions and becoming as knowledgeable as you can so that the book is as accurate as possible.

Good luck and keep us posted, sounds cool!

Autumn 33 w/CF

 

[Chantal]

Hi Autumn! Thank you for all the info, it was actually super clear! I do want the book to be set in the US so more people can relate to the settings, but part of the story would deal with financial issues related to obtaining a transplant...

from I what I understand so far the US helps anyone in need when it comes to this (please correct me of I'm wrong!) but perhaps doesn't pitch in as much for after care drugs? If that's true, which seems weird given they'd spend half a million dollars for a transplant, when all is said and told is there a dollar amount a CF transplant recipient needs to come up with themselves?

what it boils down to, is I'm seeking a scenario where the only thing getting in the way of a transplant is money...

 

[MikeInMT]

A year ago I was told from social worker at the university of washington medical center for some one with no form of insurance needs to have 500, 000 $ upfront before surgery. That number is less for non cf patients only needing 1 lung. And if it helps the total bill for my surgery was 670, 000 $. That sum did not include any of the after care. Just from when I got the call to come until I was released from the hospital. The cost alone for the "organ percument" was almost 250, 000 $. Kind of funny get billed quarter of a million dollars to get free lungs.