Re: medical costs for treatments...our story

[Guest guest]

lora: i am so sorry for what has happened to your family. i too went through

all the problems and stress of not knowing financially what was around the

corner. i was dxd in 2003. my husband, me and three children had medical

insurance through his employer. but in late 2003 he was laid off. we have been

soooo thankful to have been able to maintain insurance and he has paid for the

stress of trying to keep us insured. i still look at the meds, tests, etc.

costs and feel guilty that i am the one that has caused my family a hell of alot

a stress. i was on gleevec for close to five years and now on sprycel. the cost

of sprycel to walmart is $5,445 a month. i have asked for help when i needed it

and tried to give back when i can. i don't know what the future holds for cml

or any cancer patient. i guess all we can do is live today. god bless you and

yours.

ann grimm

[ ] medical costs for treatments...our story

they are not able to tell you the whole costs....believe me!! But this is

not due to negligence.....just folks who don't experience catastrophic

medical debt don't understand what our situation is like. Even if we had

medical

insurance at the time of diagnosis, we still wouldn't have had the funds for

co-pays, balance due, etc.

there will be the regular labs...usually $54 for CBC, etc...

labs for the cytogenic (sp?) testing...that is about $1500!!!!!

then all the other costs....nickel & dime......

the bone marrow aspiration is around $1500 too I think so the price quoted

sounds right.....

Hubby gets a shot for low hemoglobin every three weeks called Aranesp that

is $3,000. yes one shot is $3K....just unbelievable.

We were so ignorant going into dh's treatment. The first appt with

oncologist was supposed to cost $200 or $500 ($250 now that I think about

it)...which of course we could not pay since hubby hadn't worked for about 4

weeks when

he became ill. So, we didn't make the appt. We got a phone call from the

oncology office because we didn't even know they were working in the

background to get dh a 30 day emergency supply of Gleevec until we could go

through

the paperwork for Novartis's Patient Assistance. I said thank you for the

surprise & the nurse or whoever was asking about Terry coming in for a weekly

lab....well, I politely explained that it was beyond our means at that time,

and of course the thought of once or twice a week of $54 was overwhelming. I

didn't ask for help, nor expected it.....we were just so in shock & numb

over the diagnosis....needed a bit of time to get my head wrapped around how

to

help my dh when we had no funds. She then asked when his first appt was

scheduled & I again explained that we weren't able to do that at that moment.

I made it clear that I couldn't make the appt till I knew beforehand I had

the ability to pay....and that I needed to know " how much " for each

procedure/lab, etc.

What was overwhelming to her was that I asked her specifically...well, how

much does that cost, etc?? Because I was going to have to filter through

all the costs & make my own decision as to what healthcare we could obtain for

dh based on our limited finances. At that point, we didn't know if & when he

would return to work at all. Very scary & very overwhelming with a sick

hubby & young children at home. At diagnosis, the oncologist was trying to

place dh into Hospice....so you can see we were on a short fuse emotionally.

This nurse realized that I wasn't just " whining " & saying we can't pay for

it. We all can whine & say we can't afford something....it is more that we

choose not to spend our money in a certain way. She then insisted that we

make his appt regardless of our ability to pay & that they would help us

determine where to go from there with dh's healthcare. It was easy for her to

say

that....but I could just see pushing my dh out in the wheelchair to the

checkout desk & them asking for $500 or whatever ....and the humiliation it

all

entails.

The first appt happened......we were asked to pay the $54 for the first set

of labs & that they waived the appt fees, etc. I did have the $54 &

paid....but of course, they wanted to have dh come back in several days for

more

labs...which then I couldn't pay for. So, I politely declined...not saying

that we couldn't pay for it. Just saying that I would make an appt when we

could....vague, but didn't wish to discuss finances in front of all the

patients

in the waiting room. Dh had already been placed on various meds when we

left the hospital....those meds were coming up for re-fills, etc. I only had

so much $$ left...much less buying the necessary groceries, etc. Worried when

& if we would get these pills called Gleevec that we were told cost $1,000 a

day. Yes, that is how much we were told Dec of 2004. I was still

trying to wrap my mind around $30,000 a MONTH!!! Only Bill Gates could afford

that. Just so much to think through. How was I going to get back to work

when hubby needed help to go to the bathroom, etc????? Who was going to

take care of him, so I could bring in funds? Would he even get better???

Thankfully, this oncology center took pity on us.......called us about 2

days later to follow up as to why dh didn't have a lab appt. I explained that

we would have to space out lab appts if & when we could do them due to

finances. Simple as that. The nurse insisted that dh needed the labs to

monitor

his progress. I assured her I understood the severity of the situation, but

our finances were not that we could spend our limited funds in that way.

She insisted we come in for the labs regardless of our ability to pay. I

politely thanked her again & declined because I knew we could not pay for so

many

services rendered. She said no, that she personally would see that this

lab appt cost would be waived.....I thanked her & made that one appt.

In the meantime....hospital, doctors, and various lab bills start arriving

from dh's hospital stay (from when he became ill & got diagnosed with CML?

We make the next trip in to the oncology center for his next lab work....and

the front desk gal asked for me to make an appointment with their Financial

person to set up payment options. I told her thank you. I couldn't make an

appt when there were not funds to make payment arrangements from.

The way our local oncology center works is that you get your labs in room

just to the side of the waiting room.....then when your lab print-out is

complete ...the nurse comes out to give you the " news " . I have never liked

that

because I think it breaks HIPPA because all the patients in the waiting room

can hear the details...but I digress. Anyway, the nurse that had made sure

the lab cost was waived was who came out....I got to thank her personally &

then she cornered me & asked about when I would be speaking with the Financial

Counselor. I explained I would make an appt once I had time to figure out

what our true budget would be & also if & when dh would return to work, etc.

She looked at me so quizically & asked if no one had explained that they

had offered charity care if we qualified, etc. No, one had done any of

that.....we were still trying to understand what CML was & how the disease

worked. In all my vagueness, no one at the front desk realized that $$ was

standing in the way of dh's care, or I am sure they would have gotten my

attention sooner.

So, she went to find a financial person.....I got hubby settled in the

waiting room...hoping he wouldn't fall out of the wheelchair since he slept

constantly. I sat down with the counselor and the bottom line ...we were able

to

obtain free care once she obtained prior tax returns & current paycheck stubs.

Our income was well below their minimum for help...and our family size

....basic things like car payments & utilities were figured in. To say I was

grateful is the understatement of the century. We were unable to obtain help

from state agencies, Medicaid, etc....so just getting this help was

wonderful.

Now, we could set lab appts & doc appts without fear of embarrasment to

stand there after the fact with no funds. We could be aggressive in getting dh

the help he needed so desperately. The emergency Gleevec arrived....the

paperwork arrived...he then qualified for 6 months of free Gleevec.

Unfortunately, Novartis was erratic in shipments & dh would be without for

weeks at a

time....but we were still VERY grateful for the free drug.

But as I was now dealing with how to pay all the outstanding hospital stay

related bills....then all the new lab bills started to arrive. Apparently,

the oncology office, also sends certain labs to be done by other lab

companies. The largest surprise was the BMB aspiration labs....at about $3000

That is when we started on the road to catastrophic medical debt. More

hospital stays, etc......credit ruined....several times a day receiving

collection

calls, etc.

I say all this to prepare you...not to depress you. Maybe you are starting

your treatment in better health than my dh was......maybe your CML was

caught earlier, etc. But be aggressive about asking if they send out labs,

xrays, etc to outside entities. Dh would be sent to other docs because of all

the side effects, etc from CML, Gleevec, and other health issues. That would

churn my stomach, because I would have to be so blunt about our limited

finances as I made the appt. Some office folks would refuse to make the

appt....so we would have to call the oncologist to get another referral to a

different

doc, etc. Many times he or our family doc would have to personally get on

the phone & call in a " favor " to get dh the appt he needed. Again, I can

only be VERY thankful for their intervention.

The sage doesn't end even though hubby was able to get medical insurance

through his employer. We owed so much.....plus current medication

needs...other medical needs....Gleevec was killing him, etc.

The joy I will share. Hubby is post 3 years since diagnosis. He returned

to working fulltime 9 months ago!! He is on Dasatinib & doing fantastically

well....so well in fact, he doesn't have to go back to a medcial study

specialist for SIX months. This week, I have two phone calls to make...one to

a

hospital & one to an ER doc office to ask about what & if any type of

charity aid we can apply for. We do have more disposable funds now...I have to

think ahead still. He currently has fluid in one ear....which means another

appt when he can't take the pain any more......he still needs to get more

exercise...do something about fluid retention for swollen ankles, etc. I have

to look at the big picture & be selective as to payment arrangements for any

new bills.

We had a surprise lab bill for some doc we never met for $165 from the

medical study hospital. (We get all his labs done at home oncology center)

Apparently, some study test was not actually covered by medical study so we

got

billed. argh!!!!!!!!!!!!!!!! Now in the scheme of things...that is

minor......but I may need to buy more meds or pay two co-pays, etc. So, I pay

them $15 a month.

While times are better I want to look into a Health Savings Account. I am

very ignorant about it, but want to learn if it would benefit us. I know the

Flexible Spending account is out because you lose the $$ if you don't use

it....and with hubby doing so much better....we surely can't afford to lose

unused $$$.

This journey at times was humiliating.....I would cry & cry from

embarrasment...but my hubby's health & life was at stake....I swallowed my

pride so many

times. But, if you don't make your needs known, how can others help you.

If you have only so much funds available, state your situation....be BOLD.

Many of our fellow CML patients sent us Gleevec to help us out.

My kids have done without many " luxuries " because their dad's survival

has been our family priority for 3 years. Now, I can choose to spend a few

dollars and go to a dollar movie, buy a toy or a pair of shoes without

overwhelming guilt that the $10 could have gone towards one more medical bill.

At

Christmas, all our children were at home...I spent more on groceries for the

holiday than I probably had in several months time. But you know when the

Mastercard commercial says " priceless " ....I had that Hallmark moment. Our

entire family sitting at the kitchen table laughing & talking. Across from me

was my husband.....absolutely priceless!!!! Worth all the effort!!!

Lora

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

[Guest guest]

Hello Lora,

Thank you for sharing your experiences with us regarding your dh's CML diagnosis

and the financial struggles which resulted from that illness.

My boyfriend was just diagnosed 3 weeks ago with CML on a routine blood draw.

This was so unexpected that we simply did not know where to turn. The

hematologist who verified the diagnosis gave us Novartis and the Max Foundation

information since we obviously were not prepared for the financial aspects of

this illness. We spent a few weeks trying to decide if we should move out of the

country or stay here in order to receive assistance with the catastrophic debt

associated with treatment. We opted for staying here: though less expensive in

other countries, noone is going to treat you without money in other countries.

Even though the debt guys will drive you crazy, at least you can receive care in

an emergency. Sometimes it takes a situation like this to wake you up to the

wonderful country in which we live.

We have now seen our hematologist, my boyfriend has had his first BMB and the

associated lab work. We are in the process of getting assistance since he has

neither health insurance or a job (despite intensive efforts to find a job over

the last 6 months).

As we read input from so many people regarding what they have gone through in

the course of their CML therapy, we find ourselves a bit overwhelmed and

somewhat intimidated by what he is about to experience as he starts his

treatment regime with Gleevec. He is gathering all the information he can find,

and we are reassuring each other that we are in this together. Our relationship

is strong and this new challenge has helped us focus on the thing in life which

is really important: his health and welfare. This is why I write to you: I can

see your strength and support for your wonderful husband, and the outcome of

that strength is displayed in what has happened to him in the last several

years. Certainly, the drugs and therapy helped, but without the strength and

love of family and friends, it could be an overwhelmingly frightening experience

and possibly affect the outcome.

Thank you again for your story. My boyfriend and I read it from beginning to

end and smiled when we saw your husband is well, at work, insured, and doing

well after three years. It inspires those of us who are just starting in the

process to have faith in God, thank Him for Gleevec and other drugs for CML, and

know that we, too, have a favorable future to anticipate. You are inspiring!

God bless you!

Sandie

--

Coon BS, ABR, ePro, CCSS

Discount Realty Inc.

Office: 702-434-9170

Cell: 702-493-2271

e-mail: sandiecoon@...

Website: www.sandiecoon.com

---- Ihsbooks@... wrote:

> they are not able to tell you the whole costs....believe me!! But this is

> not due to negligence.....just folks who don't experience catastrophic

> medical debt don't understand what our situation is like. Even if we had

medical

> insurance at the time of diagnosis, we still wouldn't have had the funds for

> co-pays, balance due, etc.

>

> there will be the regular labs...usually $54 for CBC, etc...

>

> labs for the cytogenic (sp?) testing...that is about $1500!!!!!

>

> then all the other costs....nickel & dime......

>

> the bone marrow aspiration is around $1500 too I think so the price quoted

> sounds right.....

>

> Hubby gets a shot for low hemoglobin every three weeks called Aranesp that

> is $3,000. yes one shot is $3K....just unbelievable.

>

> We were so ignorant going into dh's treatment. The first appt with

> oncologist was supposed to cost $200 or $500 ($250 now that I think about

> it)...which of course we could not pay since hubby hadn't worked for about 4

weeks when

> he became ill. So, we didn't make the appt. We got a phone call from the

> oncology office because we didn't even know they were working in the

> background to get dh a 30 day emergency supply of Gleevec until we could go

through

> the paperwork for Novartis's Patient Assistance. I said thank you for the

> surprise & the nurse or whoever was asking about Terry coming in for a weekly

> lab....well, I politely explained that it was beyond our means at that time,

> and of course the thought of once or twice a week of $54 was overwhelming. I

> didn't ask for help, nor expected it.....we were just so in shock & numb

> over the diagnosis....needed a bit of time to get my head wrapped around how

to

> help my dh when we had no funds. She then asked when his first appt was

> scheduled & I again explained that we weren't able to do that at that moment.

> I made it clear that I couldn't make the appt till I knew beforehand I had

> the ability to pay....and that I needed to know " how much " for each

> procedure/lab, etc.

>

> What was overwhelming to her was that I asked her specifically...well, how

> much does that cost, etc?? Because I was going to have to filter through

> all the costs & make my own decision as to what healthcare we could obtain

for

> dh based on our limited finances. At that point, we didn't know if & when he

> would return to work at all. Very scary & very overwhelming with a sick

> hubby & young children at home. At diagnosis, the oncologist was trying to

> place dh into Hospice....so you can see we were on a short fuse emotionally.

>

> This nurse realized that I wasn't just " whining " & saying we can't pay for

> it. We all can whine & say we can't afford something....it is more that we

> choose not to spend our money in a certain way. She then insisted that we

> make his appt regardless of our ability to pay & that they would help us

> determine where to go from there with dh's healthcare. It was easy for her

to say

> that....but I could just see pushing my dh out in the wheelchair to the

> checkout desk & them asking for $500 or whatever ....and the humiliation it

all

> entails.

>

> The first appt happened......we were asked to pay the $54 for the first set

> of labs & that they waived the appt fees, etc. I did have the $54 &

> paid....but of course, they wanted to have dh come back in several days for

more

> labs...which then I couldn't pay for. So, I politely declined...not saying

> that we couldn't pay for it. Just saying that I would make an appt when we

> could....vague, but didn't wish to discuss finances in front of all the

patients

> in the waiting room. Dh had already been placed on various meds when we

> left the hospital....those meds were coming up for re-fills, etc. I only

had

> so much $$ left...much less buying the necessary groceries, etc. Worried

when

> & if we would get these pills called Gleevec that we were told cost $1,000 a

> day. Yes, that is how much we were told Dec of 2004. I was still

> trying to wrap my mind around $30,000 a MONTH!!! Only Bill Gates could

afford

> that. Just so much to think through. How was I going to get back to

work

> when hubby needed help to go to the bathroom, etc????? Who was going to

> take care of him, so I could bring in funds? Would he even get better???

>

> Thankfully, this oncology center took pity on us.......called us about 2

> days later to follow up as to why dh didn't have a lab appt. I explained

that

> we would have to space out lab appts if & when we could do them due to

> finances. Simple as that. The nurse insisted that dh needed the labs to

monitor

> his progress. I assured her I understood the severity of the situation, but

> our finances were not that we could spend our limited funds in that way.

> She insisted we come in for the labs regardless of our ability to pay. I

> politely thanked her again & declined because I knew we could not pay for so

many

> services rendered. She said no, that she personally would see that this

> lab appt cost would be waived.....I thanked her & made that one appt.

>

> In the meantime....hospital, doctors, and various lab bills start arriving

> from dh's hospital stay (from when he became ill & got diagnosed with CML?

> We make the next trip in to the oncology center for his next lab work....and

> the front desk gal asked for me to make an appointment with their Financial

> person to set up payment options. I told her thank you. I couldn't make

an

> appt when there were not funds to make payment arrangements from.

>

> The way our local oncology center works is that you get your labs in room

> just to the side of the waiting room.....then when your lab print-out is

> complete ...the nurse comes out to give you the " news " . I have never liked

that

> because I think it breaks HIPPA because all the patients in the waiting room

> can hear the details...but I digress. Anyway, the nurse that had made sure

> the lab cost was waived was who came out....I got to thank her personally &

> then she cornered me & asked about when I would be speaking with the

Financial

> Counselor. I explained I would make an appt once I had time to figure out

> what our true budget would be & also if & when dh would return to work, etc.

> She looked at me so quizically & asked if no one had explained that they

> had offered charity care if we qualified, etc. No, one had done any of

> that.....we were still trying to understand what CML was & how the disease

> worked. In all my vagueness, no one at the front desk realized that $$ was

> standing in the way of dh's care, or I am sure they would have gotten my

> attention sooner.

>

> So, she went to find a financial person.....I got hubby settled in the

> waiting room...hoping he wouldn't fall out of the wheelchair since he slept

> constantly. I sat down with the counselor and the bottom line ...we were

able to

> obtain free care once she obtained prior tax returns & current paycheck

stubs.

> Our income was well below their minimum for help...and our family size

> ....basic things like car payments & utilities were figured in. To say I

was

> grateful is the understatement of the century. We were unable to obtain

help

> from state agencies, Medicaid, etc....so just getting this help was

> wonderful.

>

> Now, we could set lab appts & doc appts without fear of embarrasment to

> stand there after the fact with no funds. We could be aggressive in getting

dh

> the help he needed so desperately. The emergency Gleevec arrived....the

> paperwork arrived...he then qualified for 6 months of free Gleevec.

> Unfortunately, Novartis was erratic in shipments & dh would be without for

weeks at a

> time....but we were still VERY grateful for the free drug.

>

> But as I was now dealing with how to pay all the outstanding hospital stay

> related bills....then all the new lab bills started to arrive. Apparently,

> the oncology office, also sends certain labs to be done by other lab

> companies. The largest surprise was the BMB aspiration labs....at about

$3000

> That is when we started on the road to catastrophic medical debt. More

> hospital stays, etc......credit ruined....several times a day receiving

collection

> calls, etc.

>

> I say all this to prepare you...not to depress you. Maybe you are starting

> your treatment in better health than my dh was......maybe your CML was

> caught earlier, etc. But be aggressive about asking if they send out labs,

> xrays, etc to outside entities. Dh would be sent to other docs because of

all

> the side effects, etc from CML, Gleevec, and other health issues. That

would

> churn my stomach, because I would have to be so blunt about our limited

> finances as I made the appt. Some office folks would refuse to make the

> appt....so we would have to call the oncologist to get another referral to a

different

> doc, etc. Many times he or our family doc would have to personally get on

> the phone & call in a " favor " to get dh the appt he needed. Again, I can

> only be VERY thankful for their intervention.

>

> The sage doesn't end even though hubby was able to get medical insurance

> through his employer. We owed so much.....plus current medication

> needs...other medical needs....Gleevec was killing him, etc.

>

> The joy I will share. Hubby is post 3 years since diagnosis. He returned

> to working fulltime 9 months ago!! He is on Dasatinib & doing fantastically

> well....so well in fact, he doesn't have to go back to a medcial study

> specialist for SIX months. This week, I have two phone calls to make...one

to a

> hospital & one to an ER doc office to ask about what & if any type of

> charity aid we can apply for. We do have more disposable funds now...I have

to

> think ahead still. He currently has fluid in one ear....which means another

> appt when he can't take the pain any more......he still needs to get more

> exercise...do something about fluid retention for swollen ankles, etc. I

have

> to look at the big picture & be selective as to payment arrangements for any

> new bills.

>

> We had a surprise lab bill for some doc we never met for $165 from the

> medical study hospital. (We get all his labs done at home oncology center)

> Apparently, some study test was not actually covered by medical study so we

got

> billed. argh!!!!!!!!!!!!!!!! Now in the scheme of things...that is

> minor......but I may need to buy more meds or pay two co-pays, etc. So, I

pay

> them $15 a month.

>

> While times are better I want to look into a Health Savings Account. I am

> very ignorant about it, but want to learn if it would benefit us. I know

the

> Flexible Spending account is out because you lose the $$ if you don't use

> it....and with hubby doing so much better....we surely can't afford to lose

> unused $$$.

>

> This journey at times was humiliating.....I would cry & cry from

> embarrasment...but my hubby's health & life was at stake....I swallowed my

pride so many

> times. But, if you don't make your needs known, how can others help you.

> If you have only so much funds available, state your situation....be BOLD.

> Many of our fellow CML patients sent us Gleevec to help us out.

>

> My kids have done without many " luxuries " because their dad's survival

> has been our family priority for 3 years. Now, I can choose to spend a few

> dollars and go to a dollar movie, buy a toy or a pair of shoes without

> overwhelming guilt that the $10 could have gone towards one more medical

bill. At

> Christmas, all our children were at home...I spent more on groceries for the

> holiday than I probably had in several months time. But you know when the

> Mastercard commercial says " priceless " ....I had that Hallmark moment. Our

> entire family sitting at the kitchen table laughing & talking. Across from

me

> was my husband.....absolutely priceless!!!! Worth all the effort!!!

>

> Lora

>

>

>

> **************Biggest Grammy Award surprises of all time on AOL Music.

>

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

> 48)

>

>

>

[Guest guest]

Lora and Sandie:

I have spent a little over a year on Gleevec. Here has been my

experience: At first I felt pretty much okay except for fatigue.

The Gleevec then kicked in and I got rashes, deep bone aching and

sweats so bad I had to shower and change my clothes multiple times

per day. I finally had to quit my job due to symptoms of exhaustion

and sweats and diarrhea. This went on and on and then it seemed I

was not responding to the Gleevec as I should. I paid a visit to Dr

Druker and he recommended increasing the dosage and taking it on an

empty stomach (really had symptoms then!), and finally my counts

started to come down and I began to feel a teensy bit better.

Now, I just started a new job, am feeling more and more energetic

every day--get up at 6 am and get to bed after midnight every night--

and I am able to do it! I am dealing with a husband who is a drug

addict as well as my illness, plus a son with severe psychiatric

problems, plus a new diagnosis of diabetes just 2 years ago too, so

it is a pretty stressful time for me. I am 53, so I believe I am

going through menopause as well, although recently my sweats have

been much less severe. Weird as it sounds, I have found that

exercise seems to help them--I just do walking--I walk all over

Seattle on my lunch hour--I work on the edge of downtown, a

beautiful office and my desk sits right next to a huge window with

an incredible view of the Space Needle, Puget Sound and the snow-

capped Olympic Mountains in the distance--just incredible. I am

grateful every day for my job, my returning energy and the fact that

I am alive one more day!

So hang in there--it will get better. I know it is hard, and there

will always be bad days along with the good, but the good ones are

so sweet--worth every bit of the pain and struggle.

God bless you both,

Vicki Schepman

> > they are not able to tell you the whole costs....believe

me!! But this is

> > not due to negligence.....just folks who don't experience

catastrophic

> > medical debt don't understand what our situation is like.

Even if we had medical

> > insurance at the time of diagnosis, we still wouldn't have had

the funds for

> > co-pays, balance due, etc.

> >

> > there will be the regular labs...usually $54 for CBC, etc...

> >

> > labs for the cytogenic (sp?) testing...that is about $1500!!!!!

> >

> > then all the other costs....nickel & dime......

> >

> > the bone marrow aspiration is around $1500 too I think so the

price quoted

> > sounds right.....

> >

> > Hubby gets a shot for low hemoglobin every three weeks called

Aranesp that

> > is $3,000. yes one shot is $3K....just unbelievable.

> >

> > We were so ignorant going into dh's treatment. The first appt

with

> > oncologist was supposed to cost $200 or $500 ($250 now that I

think about

> > it)...which of course we could not pay since hubby hadn't worked

for about 4 weeks when

> > he became ill. So, we didn't make the appt. We got a phone

call from the

> > oncology office because we didn't even know they were working

in the

> > background to get dh a 30 day emergency supply of Gleevec until

we could go through

> > the paperwork for Novartis's Patient Assistance. I said thank

you for the

> > surprise & the nurse or whoever was asking about Terry coming

in for a weekly

> > lab....well, I politely explained that it was beyond our means

at that time,

> > and of course the thought of once or twice a week of $54 was

overwhelming. I

> > didn't ask for help, nor expected it.....we were just so in

shock & numb

> > over the diagnosis....needed a bit of time to get my head

wrapped around how to

> > help my dh when we had no funds. She then asked when his

first appt was

> > scheduled & I again explained that we weren't able to do that at

that moment.

> > I made it clear that I couldn't make the appt till I knew

beforehand I had

> > the ability to pay....and that I needed to know " how much " for

each

> > procedure/lab, etc.

> >

> > What was overwhelming to her was that I asked her

specifically...well, how

> > much does that cost, etc?? Because I was going to have to

filter through

> > all the costs & make my own decision as to what healthcare we

could obtain for

> > dh based on our limited finances. At that point, we didn't

know if & when he

> > would return to work at all. Very scary & very overwhelming

with a sick

> > hubby & young children at home. At diagnosis, the oncologist

was trying to

> > place dh into Hospice....so you can see we were on a short fuse

emotionally.

> >

> > This nurse realized that I wasn't just " whining " & saying we

can't pay for

> > it. We all can whine & say we can't afford something....it is

more that we

> > choose not to spend our money in a certain way. She then

insisted that we

> > make his appt regardless of our ability to pay & that they

would help us

> > determine where to go from there with dh's healthcare. It was

easy for her to say

> > that....but I could just see pushing my dh out in the

wheelchair to the

> > checkout desk & them asking for $500 or whatever ....and the

humiliation it all

> > entails.

> >

> > The first appt happened......we were asked to pay the $54 for

the first set

> > of labs & that they waived the appt fees, etc. I did have the

$54 &

> > paid....but of course, they wanted to have dh come back in

several days for more

> > labs...which then I couldn't pay for. So, I politely

declined...not saying

> > that we couldn't pay for it. Just saying that I would make an

appt when we

> > could....vague, but didn't wish to discuss finances in front of

all the patients

> > in the waiting room. Dh had already been placed on various

meds when we

> > left the hospital....those meds were coming up for re-fills,

etc. I only had

> > so much $$ left...much less buying the necessary groceries,

etc. Worried when

> > & if we would get these pills called Gleevec that we were told

cost $1,000 a

> > day. Yes, that is how much we were told Dec of 2004. I

was still

> > trying to wrap my mind around $30,000 a MONTH!!! Only Bill

Gates could afford

> > that. Just so much to think through. How was I going to

get back to work

> > when hubby needed help to go to the bathroom, etc????? Who

was going to

> > take care of him, so I could bring in funds? Would he even

get better???

> >

> > Thankfully, this oncology center took pity on us.......called us

about 2

> > days later to follow up as to why dh didn't have a lab appt.

I explained that

> > we would have to space out lab appts if & when we could do them

due to

> > finances. Simple as that. The nurse insisted that dh needed

the labs to monitor

> > his progress. I assured her I understood the severity of the

situation, but

> > our finances were not that we could spend our limited funds in

that way.

> > She insisted we come in for the labs regardless of our ability

to pay. I

> > politely thanked her again & declined because I knew we could

not pay for so many

> > services rendered. She said no, that she personally would

see that this

> > lab appt cost would be waived.....I thanked her & made that one

appt.

> >

> > In the meantime....hospital, doctors, and various lab bills

start arriving

> > from dh's hospital stay (from when he became ill & got diagnosed

with CML?

> > We make the next trip in to the oncology center for his next

lab work....and

> > the front desk gal asked for me to make an appointment with

their Financial

> > person to set up payment options. I told her thank you. I

couldn't make an

> > appt when there were not funds to make payment arrangements

from.

> >

> > The way our local oncology center works is that you get your

labs in room

> > just to the side of the waiting room.....then when your lab

print-out is

> > complete ...the nurse comes out to give you the " news " . I have

never liked that

> > because I think it breaks HIPPA because all the patients in the

waiting room

> > can hear the details...but I digress. Anyway, the nurse that

had made sure

> > the lab cost was waived was who came out....I got to thank her

personally &

> > then she cornered me & asked about when I would be speaking

with the Financial

> > Counselor. I explained I would make an appt once I had time

to figure out

> > what our true budget would be & also if & when dh would return

to work, etc.

> > She looked at me so quizically & asked if no one had

explained that they

> > had offered charity care if we qualified, etc. No, one had

done any of

> > that.....we were still trying to understand what CML was & how

the disease

> > worked. In all my vagueness, no one at the front desk realized

that $$ was

> > standing in the way of dh's care, or I am sure they would have

gotten my

> > attention sooner.

> >

> > So, she went to find a financial person.....I got hubby settled

in the

> > waiting room...hoping he wouldn't fall out of the wheelchair

since he slept

> > constantly. I sat down with the counselor and the bottom

line ...we were able to

> > obtain free care once she obtained prior tax returns & current

paycheck stubs.

> > Our income was well below their minimum for help...and our

family size

> > ....basic things like car payments & utilities were figured

in. To say I was

> > grateful is the understatement of the century. We were

unable to obtain help

> > from state agencies, Medicaid, etc....so just getting this help

was

> > wonderful.

> >

> > Now, we could set lab appts & doc appts without fear of

embarrasment to

> > stand there after the fact with no funds. We could be

aggressive in getting dh

> > the help he needed so desperately. The emergency Gleevec

arrived....the

> > paperwork arrived...he then qualified for 6 months of free

Gleevec.

> > Unfortunately, Novartis was erratic in shipments & dh would be

without for weeks at a

> > time....but we were still VERY grateful for the free drug.

> >

> > But as I was now dealing with how to pay all the outstanding

hospital stay

> > related bills....then all the new lab bills started to

arrive. Apparently,

> > the oncology office, also sends certain labs to be done by other

lab

> > companies. The largest surprise was the BMB aspiration

labs....at about $3000

> > That is when we started on the road to catastrophic medical

debt. More

> > hospital stays, etc......credit ruined....several times a day

receiving collection

> > calls, etc.

> >

> > I say all this to prepare you...not to depress you. Maybe you

are starting

> > your treatment in better health than my dh was......maybe your

CML was

> > caught earlier, etc. But be aggressive about asking if they

send out labs,

> > xrays, etc to outside entities. Dh would be sent to other

docs because of all

> > the side effects, etc from CML, Gleevec, and other health

issues. That would

> > churn my stomach, because I would have to be so blunt about our

limited

> > finances as I made the appt. Some office folks would refuse to

make the

> > appt....so we would have to call the oncologist to get another

referral to a different

> > doc, etc. Many times he or our family doc would have to

personally get on

> > the phone & call in a " favor " to get dh the appt he needed.

Again, I can

> > only be VERY thankful for their intervention.

> >

> > The sage doesn't end even though hubby was able to get medical

insurance

> > through his employer. We owed so much.....plus current

medication

> > needs...other medical needs....Gleevec was killing him, etc.

> >

> > The joy I will share. Hubby is post 3 years since diagnosis.

He returned

> > to working fulltime 9 months ago!! He is on Dasatinib & doing

fantastically

> > well....so well in fact, he doesn't have to go back to a

medcial study

> > specialist for SIX months. This week, I have two phone calls

to make...one to a

> > hospital & one to an ER doc office to ask about what & if any

type of

> > charity aid we can apply for. We do have more disposable

funds now...I have to

> > think ahead still. He currently has fluid in one ear....which

means another

> > appt when he can't take the pain any more......he still needs

to get more

> > exercise...do something about fluid retention for swollen

ankles, etc. I have

> > to look at the big picture & be selective as to payment

arrangements for any

> > new bills.

> >

> > We had a surprise lab bill for some doc we never met for $165

from the

> > medical study hospital. (We get all his labs done at home

oncology center)

> > Apparently, some study test was not actually covered by medical

study so we got

> > billed. argh!!!!!!!!!!!!!!!! Now in the scheme of

things...that is

> > minor......but I may need to buy more meds or pay two co-pays,

etc. So, I pay

> > them $15 a month.

> >

> > While times are better I want to look into a Health Savings

Account. I am

> > very ignorant about it, but want to learn if it would benefit

us. I know the

> > Flexible Spending account is out because you lose the $$ if you

don't use

> > it....and with hubby doing so much better....we surely can't

afford to lose

> > unused $$$.

> >

> > This journey at times was humiliating.....I would cry & cry

from

> > embarrasment...but my hubby's health & life was at stake....I

swallowed my pride so many

> > times. But, if you don't make your needs known, how can

others help you.

> > If you have only so much funds available, state your

situation....be BOLD.

> > Many of our fellow CML patients sent us Gleevec to help us

out.

> >

> > My kids have done without many " luxuries " because their

dad's survival

> > has been our family priority for 3 years. Now, I can choose

to spend a few

> > dollars and go to a dollar movie, buy a toy or a pair of shoes

without

> > overwhelming guilt that the $10 could have gone towards one more

medical bill. At

> > Christmas, all our children were at home...I spent more on

groceries for the

> > holiday than I probably had in several months time. But you

know when the

> > Mastercard commercial says " priceless " ....I had that Hallmark

moment. Our

> > entire family sitting at the kitchen table laughing &

talking. Across from me

> > was my husband.....absolutely priceless!!!! Worth all the

effort!!!

> >

> > Lora

> >

> >

> >

> > **************Biggest Grammy Award surprises of all time on AOL

Music.

> > (http://music.aol.com/grammys/pictures/never-won-a-grammy?

NCID=aolcmp003000000025

> > 48)

> >

> >

> >