RE: Husdband's Insurance Denied Transplant

[Guest guest]

My suggestion? Since their problem is most likely the cost of tx, I'd sit down and also figure up (ask the hospital's financial dept or someone for help) the cost of any treatments he's currently undergoing that will no longer be necessary with tx, and any that will be upcoming (stenting and the like - I know each time needs to have an ERCP, he ends up inpatient for a minimum of 7 days, has been as long as 2 weeks - costing in excess of $50,000 most times). I have heard of insurance companies changing their minds when they've found out that it's going to cost them WAY more to limp someone along than to approve the tx. How sad that peoples' lives have to come down to dollars and cents, but sometimes that's the case with the ones who hold the cards. Also, talk to the tx social worker & such - find out his/her suggestions on what to do next about this situation. This obviously isn't a first time

problem. And look into applying for disability for your husband. Amilmaclean@... wrote: My husband was diagnosed with PSC in March and was placed on the transplant list in May at Henry Ford in Detroit. His meld is only a 7, but his PSC is already advanced, he has chirrosis, 7 bands already from bleeds and has acites. He is extremely fatigued and unable to work because he is a Mason. He has a PPOM insurance and we just learned Friday that they denied his tranplant becasue they said he is stable. I will be calling on

Monday to ask how they determined that. As we all know a transplant is necessary at some point. The doctors are watching him closley because he also has strictures in his bile ducts and they are worried that he might get cancer. It is like a race against the clock. His brother is currenlty being tested for live donor transplant, but now I have to fight the insurance company. Any suggestion on how I should handle this with the insurance company. Any help would be greatly appreciated.

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[Guest guest]

My suggestion? Since their problem is most likely the cost of tx, I'd sit down and also figure up (ask the hospital's financial dept or someone for help) the cost of any treatments he's currently undergoing that will no longer be necessary with tx, and any that will be upcoming (stenting and the like - I know each time needs to have an ERCP, he ends up inpatient for a minimum of 7 days, has been as long as 2 weeks - costing in excess of $50,000 most times). I have heard of insurance companies changing their minds when they've found out that it's going to cost them WAY more to limp someone along than to approve the tx. How sad that peoples' lives have to come down to dollars and cents, but sometimes that's the case with the ones who hold the cards. Also, talk to the tx social worker & such - find out his/her suggestions on what to do next about this situation. This obviously isn't a first time

problem. And look into applying for disability for your husband. Amilmaclean@... wrote: My husband was diagnosed with PSC in March and was placed on the transplant list in May at Henry Ford in Detroit. His meld is only a 7, but his PSC is already advanced, he has chirrosis, 7 bands already from bleeds and has acites. He is extremely fatigued and unable to work because he is a Mason. He has a PPOM insurance and we just learned Friday that they denied his tranplant becasue they said he is stable. I will be calling on

Monday to ask how they determined that. As we all know a transplant is necessary at some point. The doctors are watching him closley because he also has strictures in his bile ducts and they are worried that he might get cancer. It is like a race against the clock. His brother is currenlty being tested for live donor transplant, but now I have to fight the insurance company. Any suggestion on how I should handle this with the insurance company. Any help would be greatly appreciated.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

My suggestion? Since their problem is most likely the cost of tx, I'd sit down and also figure up (ask the hospital's financial dept or someone for help) the cost of any treatments he's currently undergoing that will no longer be necessary with tx, and any that will be upcoming (stenting and the like - I know each time needs to have an ERCP, he ends up inpatient for a minimum of 7 days, has been as long as 2 weeks - costing in excess of $50,000 most times). I have heard of insurance companies changing their minds when they've found out that it's going to cost them WAY more to limp someone along than to approve the tx. How sad that peoples' lives have to come down to dollars and cents, but sometimes that's the case with the ones who hold the cards. Also, talk to the tx social worker & such - find out his/her suggestions on what to do next about this situation. This obviously isn't a first time

problem. And look into applying for disability for your husband. Amilmaclean@... wrote: My husband was diagnosed with PSC in March and was placed on the transplant list in May at Henry Ford in Detroit. His meld is only a 7, but his PSC is already advanced, he has chirrosis, 7 bands already from bleeds and has acites. He is extremely fatigued and unable to work because he is a Mason. He has a PPOM insurance and we just learned Friday that they denied his tranplant becasue they said he is stable. I will be calling on

Monday to ask how they determined that. As we all know a transplant is necessary at some point. The doctors are watching him closley because he also has strictures in his bile ducts and they are worried that he might get cancer. It is like a race against the clock. His brother is currenlty being tested for live donor transplant, but now I have to fight the insurance company. Any suggestion on how I should handle this with the insurance company. Any help would be greatly appreciated.

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Go to the top! Ask to speak with the Medical Director

of your insurance company. The Medical Director

should have the final say over all medical decisions

especially one as important (and expensive) as this

one.

If at all possible try to arrange to have your

husband's physician speak directly with the Medical

Director. Dr's listen to other doctors much better

than the caregiver in these situations.

If all of this fails...play hardball. Go to the local

newspapers and tell them of your plight. Call all the

news stations. " Insurance company won't pay for

husband's needed transplant...story at 6pm " .

Dike Ajiri

psc dx 2002 and going to my annual physical with Dr.

Lindor at Mayo Monday, June 26th.

__________________________________________________

[Guest guest]

Go to the top! Ask to speak with the Medical Director

of your insurance company. The Medical Director

should have the final say over all medical decisions

especially one as important (and expensive) as this

one.

If at all possible try to arrange to have your

husband's physician speak directly with the Medical

Director. Dr's listen to other doctors much better

than the caregiver in these situations.

If all of this fails...play hardball. Go to the local

newspapers and tell them of your plight. Call all the

news stations. " Insurance company won't pay for

husband's needed transplant...story at 6pm " .

Dike Ajiri

psc dx 2002 and going to my annual physical with Dr.

Lindor at Mayo Monday, June 26th.

__________________________________________________

[Guest guest]

Go to the top! Ask to speak with the Medical Director

of your insurance company. The Medical Director

should have the final say over all medical decisions

especially one as important (and expensive) as this

one.

If at all possible try to arrange to have your

husband's physician speak directly with the Medical

Director. Dr's listen to other doctors much better

than the caregiver in these situations.

If all of this fails...play hardball. Go to the local

newspapers and tell them of your plight. Call all the

news stations. " Insurance company won't pay for

husband's needed transplant...story at 6pm " .

Dike Ajiri

psc dx 2002 and going to my annual physical with Dr.

Lindor at Mayo Monday, June 26th.

__________________________________________________

[Guest guest]

-----Original

Message-----

His meld is only a 7, he has chirrosis, 7 bands already from bleeds and

has acites. He is extremely fatigued

- unable to work   insurance denied his tranplant becasue they

said he is stable.  As we all know a

transplant is necessary at some point.

I know everyone has

told you to fight the insurance company. 

But at this point, IMHO I doubt you’ll win anything, except more

stress.  If he has a MELD of 7, the

insurance company is right, it is too early for a transplant and even if his

insurance company approved it, the transplant center still wouldn’t do

it, he isn’t sick enough at a MELD 7. 

I know all about being “stable” my son was dx with cirrhosis

6½ years ago.  “Cirrhosis” in

itself is not a reason to transplant, neither is banding, fatigue or ascites, every

one has strictures in their bile ducts, and we all worry about cancer, so they

don’t count, they are “expected” symptoms, not reason to

transplant.  But unless or until his MELD

score is high enough, there isn’t anything you or your insurance company

can do about it.  Getting a Living Donor

might speed things up, but even then, they won’t do the transplant until

it’s time.

I know what the waiting

is like, it’s almost intolerable and I know how absolutely horrible it is

to have to watch a loved one suffer.  I

wish no one had to go through that, but MELD rules the day.  The MELD score decides who and when a person gets

transplanted, so it’s only natural insurance companies rely on it too.  Take comfort in the fact the company said “not

now”, they didn’t say they wouldn’t pay at some point, just

not now.  I’m sorry you and your

husband have to go through this, but until someone finds a cure, I’m

afraid we’ll all have to put up with it, but on the other hand, it beats it

sure beats the alternative. ;-)

 Barb in Texas        

[Guest guest]

-----Original

Message-----

His meld is only a 7, he has chirrosis, 7 bands already from bleeds and

has acites. He is extremely fatigued

- unable to work   insurance denied his tranplant becasue they

said he is stable.  As we all know a

transplant is necessary at some point.

I know everyone has

told you to fight the insurance company. 

But at this point, IMHO I doubt you’ll win anything, except more

stress.  If he has a MELD of 7, the

insurance company is right, it is too early for a transplant and even if his

insurance company approved it, the transplant center still wouldn’t do

it, he isn’t sick enough at a MELD 7. 

I know all about being “stable” my son was dx with cirrhosis

6½ years ago.  “Cirrhosis” in

itself is not a reason to transplant, neither is banding, fatigue or ascites, every

one has strictures in their bile ducts, and we all worry about cancer, so they

don’t count, they are “expected” symptoms, not reason to

transplant.  But unless or until his MELD

score is high enough, there isn’t anything you or your insurance company

can do about it.  Getting a Living Donor

might speed things up, but even then, they won’t do the transplant until

it’s time.

I know what the waiting

is like, it’s almost intolerable and I know how absolutely horrible it is

to have to watch a loved one suffer.  I

wish no one had to go through that, but MELD rules the day.  The MELD score decides who and when a person gets

transplanted, so it’s only natural insurance companies rely on it too.  Take comfort in the fact the company said “not

now”, they didn’t say they wouldn’t pay at some point, just

not now.  I’m sorry you and your

husband have to go through this, but until someone finds a cure, I’m

afraid we’ll all have to put up with it, but on the other hand, it beats it

sure beats the alternative. ;-)

 Barb in Texas        

[Guest guest]

-----Original

Message-----

His meld is only a 7, he has chirrosis, 7 bands already from bleeds and

has acites. He is extremely fatigued

- unable to work   insurance denied his tranplant becasue they

said he is stable.  As we all know a

transplant is necessary at some point.

I know everyone has

told you to fight the insurance company. 

But at this point, IMHO I doubt you’ll win anything, except more

stress.  If he has a MELD of 7, the

insurance company is right, it is too early for a transplant and even if his

insurance company approved it, the transplant center still wouldn’t do

it, he isn’t sick enough at a MELD 7. 

I know all about being “stable” my son was dx with cirrhosis

6½ years ago.  “Cirrhosis” in

itself is not a reason to transplant, neither is banding, fatigue or ascites, every

one has strictures in their bile ducts, and we all worry about cancer, so they

don’t count, they are “expected” symptoms, not reason to

transplant.  But unless or until his MELD

score is high enough, there isn’t anything you or your insurance company

can do about it.  Getting a Living Donor

might speed things up, but even then, they won’t do the transplant until

it’s time.

I know what the waiting

is like, it’s almost intolerable and I know how absolutely horrible it is

to have to watch a loved one suffer.  I

wish no one had to go through that, but MELD rules the day.  The MELD score decides who and when a person gets

transplanted, so it’s only natural insurance companies rely on it too.  Take comfort in the fact the company said “not

now”, they didn’t say they wouldn’t pay at some point, just

not now.  I’m sorry you and your

husband have to go through this, but until someone finds a cure, I’m

afraid we’ll all have to put up with it, but on the other hand, it beats it

sure beats the alternative. ;-)

 Barb in Texas        

[Guest guest]

Thanks to all who answered. This is such a great group and it gets me through a lot of hard days.

-------------- Original message --------------

..

[Guest guest]

Thanks to all who answered. This is such a great group and it gets me through a lot of hard days.

-------------- Original message --------------

..

[Guest guest]

Thanks to all who answered. This is such a great group and it gets me through a lot of hard days.

-------------- Original message --------------

..

[Guest guest]

IMHO I doubt you'll win anything, except more stress. If he

> has a MELD of 7, the insurance company is right, it is too early

for a

> transplant and even if his insurance company approved it, the

transplant

> center still wouldn't do it, he isn't sick enough at a MELD 7. I

know

> all about being " stable " my son was dx with cirrhosis 6½ years ago.

> " Cirrhosis " in itself is not a reason to transplant, neither is

banding,

> fatigue or ascites, every one has strictures in their bile ducts,

and we

> all worry about cancer, so they don't count, they are " expected "

> symptoms, not reason to transplant. But unless or until his MELD

score

> is high enough, there isn't anything you or your insurance company

can

> do about it. Getting a Living Donor might speed things up, but

even

> then, they won't do the transplant until it's time.

>

> Barb in Texas

I am floored by your response! His doctors already listed him, so

that means he has gone through all the testing and is deemed a good

candidate. Yes his meld score is a 7, but as our transplant team has

told us, it is not a correct reflection of a PSC patents condition.

That it is a balancing act of when to do the transplant with someone

with PSC. They don't want to wait too long because of the cancer

risk.

As for the OP, personally, I would work with your transplant team

and see what they can do to help with your insurance issues. I will

have you and your husband in my thoughts and prayers.

Litsa

[Guest guest]

IMHO I doubt you'll win anything, except more stress. If he

> has a MELD of 7, the insurance company is right, it is too early

for a

> transplant and even if his insurance company approved it, the

transplant

> center still wouldn't do it, he isn't sick enough at a MELD 7. I

know

> all about being " stable " my son was dx with cirrhosis 6½ years ago.

> " Cirrhosis " in itself is not a reason to transplant, neither is

banding,

> fatigue or ascites, every one has strictures in their bile ducts,

and we

> all worry about cancer, so they don't count, they are " expected "

> symptoms, not reason to transplant. But unless or until his MELD

score

> is high enough, there isn't anything you or your insurance company

can

> do about it. Getting a Living Donor might speed things up, but

even

> then, they won't do the transplant until it's time.

>

> Barb in Texas

I am floored by your response! His doctors already listed him, so

that means he has gone through all the testing and is deemed a good

candidate. Yes his meld score is a 7, but as our transplant team has

told us, it is not a correct reflection of a PSC patents condition.

That it is a balancing act of when to do the transplant with someone

with PSC. They don't want to wait too long because of the cancer

risk.

As for the OP, personally, I would work with your transplant team

and see what they can do to help with your insurance issues. I will

have you and your husband in my thoughts and prayers.

Litsa

[Guest guest]

Litsa,

I agree

completely. No sense being so pessimistic and negative when everything in all

of this is so subjective even with MELD in place. It all depends on who you

meet and what they will do for you and live donation is always out there too.

This is when I just want to go and climb under a rock for a few months.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

Litsa,

I agree

completely. No sense being so pessimistic and negative when everything in all

of this is so subjective even with MELD in place. It all depends on who you

meet and what they will do for you and live donation is always out there too.

This is when I just want to go and climb under a rock for a few months.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

-----Original

Message-----

I am floored by your response! His

doctors already listed him, so that means he has gone through all the testing

and is deemed a good candidate. Yes his meld score is a 7

I’m sorry if I

upset anyone, but I’ve never heard of a center that transplanted someone

at a MELD 7, there may be one, I’ve just never heard of it being done.

There’s no doubt

someone can be “listed” at 7, many people are, and I’m sure

he is a good, even great candidate or he wouldn’t have been listed in the

first place. But, listing someone

and the timing of an actual transplant are 2 very different things. I doubt any insurance company (including

Medicare & Medicaid) would agree to pay for a transplant with a MELD 7 score. Living donors do have the option of an

earlier transplant, but even then, I doubt they’d do it at MELD 7.

And frankly you wouldn’t

want them to get a transplant too early.

There is a study that shows a higher mortality rate with low MELD

scores. Plus, there is a possibility

that someone can remain listed (in fairly “good” health) for years,

even to the point of changing their listing to “inactive status”) that

actually happened to Phil / Peg’s

husband.

I’m sorry you

were “floored by my response”, I didn’t mean to upset anyone,

but I believe she should wait and save her fight (if it’s needed) for a

later date and higher MELD score.

Barb in Texas

P.S. Before MELD

scores, transplants were being performed using the CPT scoring system. CPT scores allowed doctors to be too subjective

with scoring, with MELD, doctors use lab scores, not much is left to someone’s

opinion. So far, while not perfect,

MELD does seem to be saving lives and with every tweak in the scoring, I think

we’ll get closer to saving every life possible, considering the organ

shortage.

[Guest guest]

-----Original

Message-----

I am floored by your response! His

doctors already listed him, so that means he has gone through all the testing

and is deemed a good candidate. Yes his meld score is a 7

I’m sorry if I

upset anyone, but I’ve never heard of a center that transplanted someone

at a MELD 7, there may be one, I’ve just never heard of it being done.

There’s no doubt

someone can be “listed” at 7, many people are, and I’m sure

he is a good, even great candidate or he wouldn’t have been listed in the

first place. But, listing someone

and the timing of an actual transplant are 2 very different things. I doubt any insurance company (including

Medicare & Medicaid) would agree to pay for a transplant with a MELD 7 score. Living donors do have the option of an

earlier transplant, but even then, I doubt they’d do it at MELD 7.

And frankly you wouldn’t

want them to get a transplant too early.

There is a study that shows a higher mortality rate with low MELD

scores. Plus, there is a possibility

that someone can remain listed (in fairly “good” health) for years,

even to the point of changing their listing to “inactive status”) that

actually happened to Phil / Peg’s

husband.

I’m sorry you

were “floored by my response”, I didn’t mean to upset anyone,

but I believe she should wait and save her fight (if it’s needed) for a

later date and higher MELD score.

Barb in Texas

P.S. Before MELD

scores, transplants were being performed using the CPT scoring system. CPT scores allowed doctors to be too subjective

with scoring, with MELD, doctors use lab scores, not much is left to someone’s

opinion. So far, while not perfect,

MELD does seem to be saving lives and with every tweak in the scoring, I think

we’ll get closer to saving every life possible, considering the organ

shortage.

[Guest guest]

Lonnie was transplanted at a MELD of 5 when he was listed. When they

ran tests the morning of his transplant they said it was closer to 10

(in just a few days' time). With such a short list at IUMed Center, I

bet there are others that have been transplanted with this low of a

MELD.

Kathy

wife of Lonnie

> I'm sorry if I upset anyone, but I've never heard of a center that

> transplanted someone at a MELD 7, there may be one, I've just never

> heard of it being done.

>

[Guest guest]

Lonnie was transplanted at a MELD of 5 when he was listed. When they

ran tests the morning of his transplant they said it was closer to 10

(in just a few days' time). With such a short list at IUMed Center, I

bet there are others that have been transplanted with this low of a

MELD.

Kathy

wife of Lonnie

> I'm sorry if I upset anyone, but I've never heard of a center that

> transplanted someone at a MELD 7, there may be one, I've just never

> heard of it being done.

>

[Guest guest]

When my wife Lori was first evaluated to be placed on the waiting

list, her MELD was 13. And the only reason she was placed on the list

was that she had a colectomy scheduled. The colectomy was not a

recommendation, it was essential if Lori wanted to live. The

transplant team didn't know how the liver would react during the

removal of the colon, so they placed her on the waiting list *just in

case*. Even though her MELD was 13, she was stable (if advanced

jaundice and ascites is stable) and there would have been no rush to

list her.

So, I was shocked that someone in a metropolitan area such as Detroit

would be placed on the list with a score of 7. Then, I checked the

OPTN data. It was interesting and suprising to me. 46% of the waiting

list registrations for the Henry Ford center have MELD scores under

10. At some centers, the percentage is even higher - close to 90%.

However, registrants in this category also have realtively long wait

times. For the Henry Ford Center, 60% of those with MELD scores under

10 have waiting times greater than one year. I guess this people would

fall under the category of " stable. " I'm sure the insurance companies

worj this data hard as well.

Lori's transplant team included a social worker, who was the contact

for any insurance related questions. Do you have a similar contact? We

also had to work with our insrance company's " Center of Excellence "

that deals with major surgeries including transplants. We had a

dedicated contact who was great to work with it, and helped us

initially with our insurance questions/problems/concerns.

[Guest guest]

When my wife Lori was first evaluated to be placed on the waiting

list, her MELD was 13. And the only reason she was placed on the list

was that she had a colectomy scheduled. The colectomy was not a

recommendation, it was essential if Lori wanted to live. The

transplant team didn't know how the liver would react during the

removal of the colon, so they placed her on the waiting list *just in

case*. Even though her MELD was 13, she was stable (if advanced

jaundice and ascites is stable) and there would have been no rush to

list her.

So, I was shocked that someone in a metropolitan area such as Detroit

would be placed on the list with a score of 7. Then, I checked the

OPTN data. It was interesting and suprising to me. 46% of the waiting

list registrations for the Henry Ford center have MELD scores under

10. At some centers, the percentage is even higher - close to 90%.

However, registrants in this category also have realtively long wait

times. For the Henry Ford Center, 60% of those with MELD scores under

10 have waiting times greater than one year. I guess this people would

fall under the category of " stable. " I'm sure the insurance companies

worj this data hard as well.

Lori's transplant team included a social worker, who was the contact

for any insurance related questions. Do you have a similar contact? We

also had to work with our insrance company's " Center of Excellence "

that deals with major surgeries including transplants. We had a

dedicated contact who was great to work with it, and helped us

initially with our insurance questions/problems/concerns.

[Guest guest]

When my wife Lori was first evaluated to be placed on the waiting

list, her MELD was 13. And the only reason she was placed on the list

was that she had a colectomy scheduled. The colectomy was not a

recommendation, it was essential if Lori wanted to live. The

transplant team didn't know how the liver would react during the

removal of the colon, so they placed her on the waiting list *just in

case*. Even though her MELD was 13, she was stable (if advanced

jaundice and ascites is stable) and there would have been no rush to

list her.

So, I was shocked that someone in a metropolitan area such as Detroit

would be placed on the list with a score of 7. Then, I checked the

OPTN data. It was interesting and suprising to me. 46% of the waiting

list registrations for the Henry Ford center have MELD scores under

10. At some centers, the percentage is even higher - close to 90%.

However, registrants in this category also have realtively long wait

times. For the Henry Ford Center, 60% of those with MELD scores under

10 have waiting times greater than one year. I guess this people would

fall under the category of " stable. " I'm sure the insurance companies

worj this data hard as well.

Lori's transplant team included a social worker, who was the contact

for any insurance related questions. Do you have a similar contact? We

also had to work with our insrance company's " Center of Excellence "

that deals with major surgeries including transplants. We had a

dedicated contact who was great to work with it, and helped us

initially with our insurance questions/problems/concerns.

[Guest guest]

I am in full support of the Meld system because it is based on how

sick you are not on a doctors oppinion. Overall it seems to be the

best way to get transplants to those who need it the most. However, I

am fairly sure everyone will agree that PSC is only a liver issue by

default. It is not the liver that is the problem, but it is a

transplant is, for the most part, the solution. It is a catch 22 when

it comes to the timing with a transplant with someone who has psc. Yes

at a melt number of 7 it may be too soon. However if you are being

hospitalized and having an ERCP every other month, and other symptoms

that make living really difficult maybe it is time to consider a

transplant. From the sounds of the OP husbands symptom living his life

is extreamly difficult.

I am sorry if it sounded like I was attacking. I guess I am fairly

sensitive about the whole thing.

Thank you for your honesty and willingness to discuss this.

Litsa

[Guest guest]

I am in full support of the Meld system because it is based on how

sick you are not on a doctors oppinion. Overall it seems to be the

best way to get transplants to those who need it the most. However, I

am fairly sure everyone will agree that PSC is only a liver issue by

default. It is not the liver that is the problem, but it is a

transplant is, for the most part, the solution. It is a catch 22 when

it comes to the timing with a transplant with someone who has psc. Yes

at a melt number of 7 it may be too soon. However if you are being

hospitalized and having an ERCP every other month, and other symptoms

that make living really difficult maybe it is time to consider a

transplant. From the sounds of the OP husbands symptom living his life

is extreamly difficult.

I am sorry if it sounded like I was attacking. I guess I am fairly

sensitive about the whole thing.

Thank you for your honesty and willingness to discuss this.

Litsa