We're In an Insurance Nightmare - denial of transplant

[Guest guest]

This is the first time I am posting here. My husband was diagnosed

in February with PSC and cholangiocarcinoma at the same time. It

was found by accident when he showed up with elevated liver enzymes

when getting a physical. Our local hospital wanted to resect part

of his liver. We went to Mayo clinic for a second opinion. They

disagreed with this plan and suggested Mike have radiation tx

followed by transplant. They have done this protocol for a decade

or so, only in cases of very early detection of the ca. We went

with the Mayo protocol. Mike has completed the radiation. His

sister is being evaluated as a donor. But our insurance is denying

the whole protocol on the grounds that they say it is experimental.

So amoung all this we must battle the insurance company. If anybody

has any thoughts or suggestions on how to approach this or how to

apply for financial assistance I would greatly appreciate it.

Bonnie (44), wife of Mike (43) parents of Sam (4) Mike's PSC dx 2/04

Virginia

[Guest guest]

Bonnie,

I understand how frustrating this must be in such a time of stress.

Sometimes it seems this is when insurance companies can be at their

worst. It is almost as if they know the family is under such stress

that they will not have the energy to fight. I have a couple of

suggestions but I hope others will weigh in as well. I am not sure

based on your e-mail what you have done so far so I will just give

you all my thoughts.

1. My first reaction is how can they view this as experimental.

Break down the procedures into their parts and what do you have? A)

Radiation treatment of cancer cells (that is certainly not

experimental and Liver transplantation. (No one can argue that as

experimental either). What part of the equation here is

experimental? In my opinion nothing. Perhaps by breaking it down

that way you might talk some sense into them.

2. All insurance companies of an appeal and review process and this

is probably where you should start. Be prepared for the run around

but you have to keep working up the chain of command until you get to

the person that will think outside the canned response. Before you

can really go to the next level you probably need to work within the

insurance company first until no one else will listen. This will

take some time and patience.

3. Can the mayo doctor write a letter in support of the history and

proven results of this protocol? I am sure he will be willing to

help in that regard.

4. If contact with the insurance company fails then does your state

have an insurance commissioner. I think a call to that office would

be the next course of action in getting someone to put pressure on

the insurance company.

5. Finally, if all else fails then often a call to your local

investigative newspaper or televeision reporter can do wonders for

getting a slow mule in gear.

Keep fighting and persistence usually brings the insurance company

around in a short periord of time. ANother resource you may hear

from soon is Liz in Virginia who had I believe the same procedure

done at Mayo and is in your home state. She may be a good resource

to answer some of your medical questions.

Good luck and keep us posted.

in Seattle

UC 1991, PSC 2001

> This is the first time I am posting here. My husband was diagnosed

> in February with PSC and cholangiocarcinoma at the same time. It

> was found by accident when he showed up with elevated liver enzymes

> when getting a physical. Our local hospital wanted to resect part

> of his liver. We went to Mayo clinic for a second opinion. They

> disagreed with this plan and suggested Mike have radiation tx

> followed by transplant. They have done this protocol for a decade

> or so, only in cases of very early detection of the ca. We went

> with the Mayo protocol. Mike has completed the radiation. His

> sister is being evaluated as a donor. But our insurance is denying

> the whole protocol on the grounds that they say it is

experimental.

> So amoung all this we must battle the insurance company. If

anybody

> has any thoughts or suggestions on how to approach this or how to

> apply for financial assistance I would greatly appreciate it.

>

> Bonnie (44), wife of Mike (43) parents of Sam (4) Mike's PSC dx 2/04

> Virginia

[Guest guest]

Dear Bonnie,

I was so sorry to read of your insurance nightmare. On the top of the

shock of the diagnosis and the effects of the radiation treatment, I am

sure that this is quite a heavy burden for your family.

It seems that has provided some excellent suggestions on dealing

with your insurance company. Since you also asked about financial

assistance, I thought that I would direct you to the Financial Support

section of the TIGER (Transplant Information Gathering for Education and

Research) webpage: <http://www.tigerfund.org/support.htm> Two programs

which may be of relevance to you are the National Transplant Assistance

Fund <http://www.transplantfund.org/> and the TIGER Family Aid Program

<http://www.tigerfund.org/program2.htm> I would hope that the staff at

either of these programs might be able to direct you to other resources.

May I ask if you have discussed this with the financial coordinator or

social worker on your transplant team? It was my social worker who

provided me with the TIGER reference when I was first evaluated for

transplant, along with references for transplant travel and medication

support programs.

Best Wishes,

Shauna (29, AIH'86, Crohns'95, PSC'99, listed @ Duke, MELD = 17)

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[Guest guest]

Bonnie,

I'm in VA and would like to offer whatever support I can. I'm sorry

your insurance company is giving you such a hard time. I've been

through the HMO nightmare in the past (though not on the level you

describe). Now we pay almost $300 a month for a PPO. My husband

maintains that job, driving nearly 1 1/2 hours to work so we can

maintain this insurance. So far, we've had little trouble there -

except over prescriptions. Liz is right - keep after them and

document everything - who you speak with the date and time, etc. That

helped immensely when I would try to get them to pay for things. I

also asked to speak to supervisors quite frequently. Some insurance

companies offer a " case manager " of sorts, so at least you're dealing

with the same person over time. Sometimes you have to ask for that,

though.

Feel free to email me privately, too. I'm in Northern VA -

Take care,

Deb in VA

AIH 1997, PSC 1998, UC 1999, Listed LTX 2001, MELD 18

> So amoung all this we must battle the insurance company. If

anybody

> has any thoughts or suggestions on how to approach this or how to

> apply for financial assistance I would greatly appreciate it.

>

> Bonnie (44), wife of Mike (43) parents of Sam (4) Mike's PSC dx 2/04

> Virginia