medical costs for treatments...our story

[Guest guest]

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)