Vivaglobin...letter to doc

[Guest guest]

WHile this is long, I wanted to post this letter that went to my

children's immunologist this morning.....we are facing financial

disaster....I am serching high and low for help and I am wondering

if anyone knows where I can find an advocate that can help us with

this very serious issue so we can keep receiving IVIG.

Terri Cerda, Mom(46), Molly (5) and Maggie (3) AND THE DOG....all

have CVID

I want to explain to you why we are so very anxious to get this on

the road....so that you understand. Currently, our insurance with

respect to our prescription drug coverage will not cover our IVIG

and it has be billed to our primary insurance. Because our hospital

will not allow our specialty drug company to give them the Octagam,

it is being covered as an out of network provider. We are being

charged a 30% copay for each person receiving IVIG. Dr. Bernstein's

office is billing over $8000 per month for Molly's IVIG and over

$7000 a month for Maggie's. Now we may be adding me to the mix.

Our monthly cost for IVIG right now....without me....is in excess of

$2500 per month. We do not have that kind of money. We have no one

helping us cover our costs. We are going to lose our home if this

continues and we plan to put it on the market in 6 weeks and give up

any hope of ever owning a home again as our credit is being

destroyed.

If we start Vivaglobin, our copay will be $25 every 3 months once we

get through the initial doses and once Caremark is on board. Dr.

Bernstein's office has agreed to work around things for us if it

becomes necessary. They will ship directly to us and then we will

take it to Dr. Bernstein and he will administer the 1st doses. The

problem is, that as long as there is no signed contract, it is still

a out of network provider and is still subject to a 30% copay. What

I know from talking to ZLB Behring and Caremark, both Caremark and

NuFactor are very close to signing the contract to provide

Vivaglobin...they have been for about a month now. We know that the

Vivaglobin for Molly will come at a cost of $1900 and for

Maggie....$1700.

I am going to be on the phone today talking with my insurance. I

was told yesterday by Dr. Bernstein's office that my insurance has

told them that they will no longer pay for the Children's IVIG. I

have no clue what I am going to do if this is true. In Molly' case,

I know that it is life threatening for her because of her repeated

bouts with pneumonia and I won't stop her IVIG....even if it meant

that we live in box in an alley (I doubt this will ever happen).

I realize the tone of this letter is very serious....but I assure

you that I am an advocate and I look at this as a challenge to help

a lot of people and I take it from that perspective. I love

challenges....bring it on.....I intend to make certain that my

children continue to receive the care that they need and....in the

long run....I know it will have a trickle effect. I thought it was

important for you to see between the lines so you understand why the

Vivaglobin is such a huge thing for us...we love you, we trust you

and we know you will do what is best for our family and other

families in our situation.