No Ins for transplant

Question

I've been told by my drs that in time - no one knows how much time - that I am going to need a transplant. I have ascities and obviously cirrhosis which means the liver is decompensated etc.  I've had preexisting conditions for so long that having insurance hasn't been an option.  I've checked and the cost of a transplant is around $520,000 and about $5000 a month for meds to keep the transplant.  So far I haven't found any options that pay for it or help pay for it.  I did find a website that teaches you how to do fundraising that deals only with people who need transplants.  But every person I've read about seems to have insurance that pays for all of the transplant, but they need help with the meds, or their insurance covers some but not all.  No one seems to have to raise the whole thing.  I am game to try and raise the money and I know my family and friends would help but that is really a huge commitment and a whole lot of money.  People would have to be helping you from all over the country, and I'm not sure if you already have to be on a transplant list for this organization to assign a counselor to work with you.  Does anyone have any ideas of how people pay for things like this when you've been screwed by the insurance companies and you don't have a house to sell to raise money?

Thanks - Sonni

heart_in_the_keyes · Answer

I am on the transplant list and waiting.  I am also 66 and on social security and medicare will pick up the full cost for the transplant and the immino  afterward because it is a life saving surgery.... there are other expenses the first few months so having a supplemental insurance is advised.  You didn't say if you are working?  If you are indeed decompensated (just because they say you will eventually have to get a transplant doesn't mean you are decompensated and there are many levels to that) but if you at the point where they want to put you through all the tests to qualify for the transplant then they would possibly write you off on disability.  O care is one way to go.  Medicaid if you are working and are eligible.  Right now I pay about $300 a month for insurance...my copay for apprx. $24,000 worth of drugs a year is about $4800 a year so insurance is important.  

If that is a current pic you look pretty young...are you working...what stage are you really at and has your doc said decompensated or compensated...completely different levels of cirrhosis.  Is you HCV active? Do you know your MELD level?  What Geno type are you? 

Also if you are going to be in the process of getting a transplant you can talk to the social worker for the transplant department and they can guide you in certain directions.  Mine is helping me with the drug they administer to you for 90 days after transplant that costs $9000 and you are responsible for 1/3 of that cost.  That means I need to come up with $3000 or hopefully get a grant or some type of assistance.  Even she suggested doing a fund raiser.  I see people do that on the web and it seems to work for them but I don't think it would work for me.  If I weren't eligible for social security I don't know what I would be doing.  All of this is so expensive. 

Good luck and personal message me with your path and how you do.

happymom2v · Answer

@ veesandee...Why will your Medicare insurance expire? I thought once you have it whether it be through disability or when you reach a certain age, you have it. I wasn't aware that it expires.

wouldy · Answer

are you still out there? ra y     ***@****  i got a transplant in 06 and had no ins. you need to go to medicare and get on disability  then you need to get a supplemental ins  because medicare is only 80%. once you complete this go to a hospital that performs liver transplants and join the club.   good luck girl  it's quite an experience and it usually takes 1 year to recover fully. Stay strong  because it is tough. stay strong   united health care is a good one

dontworry_behappy1 · Answer

"transplant living.org" Rx drug assistance gives phone numbers to call for prescription drug assistance. You might want to also post your question in the "transplant" forum and the " cirrhosis of the liver forum".

veesandee · Answer

I am wondering if you found any solution to your transplant?  I am three years post Liver Transplant.  I am finding myself with my Medicare Insurance expiring and how do I afford my medications?  Have you found any answers?

SonniQ · Answer

You make it sound so easy.  The cost of individual health insurance is so high there is no way.  I would also not be able to be treated for the cirrhosis, and having 2 years to wait it out is crap shoot.  When I've talked to insurers in the past and told them I had hep C they basically laughed at me and said no way.  With all that is in the media and so many people having their premiums raised - one couple had theirs raised to over $2400 a month - how do they do it?  The woman had had a surgery done about a year ago and they are petrefied of not being able to pay it each month and then have something else happen and they can't get other insurance.  How does one pay over $2400 every month on top of everything else.  Scary.


Sonni

orphanedhawk · Answer

I had a live liver transplant in Taiwan. My portal vein had to be entirely reconstructed which complicated my surgery. Our grown daughter was my donor. 
The cost for both of us, various tests and our time in the hospital cost $75,000. This didn't included airfare, food or my husbands apartment rental.

The surgery was great but the aftercare was extremely difficult and I'm not  recommending it but I'm writing to let you know there are other options.

I've since done some web searching I found a few hospitals that have financial assistance even possibly for transplants.

There is a program which supplies free or reduced cost prograf, the immune suppression med I take.

Currently, I've had 2 ERCP's which are out patient procedures for a common complication, scarring/blockage of the bile duct. The two cost around $20,000. But because I have a low income, I get financial assistance at my hospital and didn't have to pay.

My advice is to do a lot of web searching. And yes, indeed start fund raisers for your care. Feel free to send me a PM and I'll answer any questions if I can.
You may also want to post on the web site of transplantbuddies.

Good luck,
OH

hcvJames · Answer

Forgive me for not commenting when you first posted. I had no words. Some things are beyond my ability to express correctly. I sincerely echo IAmTheWalrus's message.

Please keep us posted.
All the very best. Love and prayers to you.

Proactive · Answer

Why not go ahead and get insurance, then attempt to wait out the exculsion time period-
if your situation allows?

"HIPAA Federal Guidelines for Pre-existing Conditions

What is a "preexisting condition exclusion" (also called a pre-ex) and how is it used?
bullet	A "preexisting condition exclusion" is a limitation or exclusion of health benefits based on the fact that a physical or mental condition was present before the first day of coverage. However, HIPAA limits the extent to which a group health plan or issuer can apply a preexisting condition exclusion, and, as stated above, prohibits issuers of individual health insurance from applying a preexisting condition exclusion to an "eligible individual.".
bullet	A preexisting condition exclusion is limited to a physical or mental condition for which medical advice, diagnosis, care, or treatment was recommended or received within the 6 month period ending on the enrollment date in a plan or policy.
bullet	During the preexisting condition exclusion period, the group health plan or issuer may opt not to cover or pay for treatment of a medical condition based on the fact that the condition was present prior to your enrollment date under the new plan or policy. (The plan or issuer must, however, pay for any unrelated covered services or conditions that arise once coverage has begun.) The enrollment date is the first day of coverage, or if there is a waiting period before coverage takes effect, the first day of the waiting period.
bullet	A group health plan can apply a preexisting condition exclusion for no more than 12 months (18 months for a late enrollee) after your enrollment date and the preexisting condition exclusion period must be reduced by your prior creditable coverage.
bullet	A group health plan cannot apply a preexisting condition exclusion to an individual who had creditable coverage (without a break of 63 or more days) of 12 months (18 months for a late enrollee)."

http://www.floridahealthinsurance.com/pre-x.htm

Dragon640 · Answer

Hi Sonni   X is right there usally trials or a program where you live also. Just google hep c trials,hep c programs stuff likr that work it up to liver transplant. Info.info,info.

IAmTheWalrus · Answer

Sorry to hear your health situation. You seem to really have a positive outlook even when confronted with such a difficult situation. I don't have any answers, but just thought I'd let you know that I'll be praying for you and wishing you well. 

As far as the meds go, I think you can get a break from the pharm companies if you have no health insurance. I hope something works out for you.

Brent

Xhrles · Answer

Have you considered moving to Massachusetts? State law is you must have insurance and they must sell it to you. Plenty of good doctors in Boston and an excellent hospital at Mass General.