Insurance

[Guest guest]

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: [mailto: ] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:%40> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

Hello Carie, I can understand your frustration. But... keep a couple of things

in mind. 1st. the person you talked to really had NO say in what happens to your

son. She may not even be an RN or someone with any specific knowledge about this

issue. She sounds very ignorant. I would encourage you to take the Ig Living

magazine with you and to talk to the Dr. directly. He has a responsibility to

discuss this with you and to help you make the right choices for your son.

Gammagard is being used all over the country for sub Q. I lived in Oklahoma for

the past 3 years and they refused to use Viva because of the expense. I live in

WA state now and we are still using Gammagard. In my son's case he did not have

IgA so it was a matter of safety but for us it has worked great. With the

problems getting Viva being imminent it may make it easier for you to get the

Gammagard approved. Just go in with LOTS of questions written down and ask him

to contact IDF prior to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses. This is

NOT a chat room but a group of over 100 families that are LIVING with the ins

and outs of immune deficiency in children. If nothing else the topics we discuss

are an excellent source to look at what is specifically important for these

kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE else

will. They may not agree with you but you have the right to ask the questions

and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with them

except getting into the system and finding all of your resources. It will take

time. We had several insurances in the past and finally stayed with Medicaid

only since it was taking care of his needs. I do not find it any harder to deal

with than " other " programs except that I have RECOURSE since it is a

Federal/State program. It is harder to hold private insurances accountable to

the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

Hello Carie, I can understand your frustration. But... keep a couple of things

in mind. 1st. the person you talked to really had NO say in what happens to your

son. She may not even be an RN or someone with any specific knowledge about this

issue. She sounds very ignorant. I would encourage you to take the Ig Living

magazine with you and to talk to the Dr. directly. He has a responsibility to

discuss this with you and to help you make the right choices for your son.

Gammagard is being used all over the country for sub Q. I lived in Oklahoma for

the past 3 years and they refused to use Viva because of the expense. I live in

WA state now and we are still using Gammagard. In my son's case he did not have

IgA so it was a matter of safety but for us it has worked great. With the

problems getting Viva being imminent it may make it easier for you to get the

Gammagard approved. Just go in with LOTS of questions written down and ask him

to contact IDF prior to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses. This is

NOT a chat room but a group of over 100 families that are LIVING with the ins

and outs of immune deficiency in children. If nothing else the topics we discuss

are an excellent source to look at what is specifically important for these

kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE else

will. They may not agree with you but you have the right to ask the questions

and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with them

except getting into the system and finding all of your resources. It will take

time. We had several insurances in the past and finally stayed with Medicaid

only since it was taking care of his needs. I do not find it any harder to deal

with than " other " programs except that I have RECOURSE since it is a

Federal/State program. It is harder to hold private insurances accountable to

the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net>

groups (DOT) <mailto:%40> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net>

groups (DOT) <mailto:%40> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

One more question, why do some Dr's not have a problem with using something

that is not FDA approved? My Dr is acting like it is absolutely not even

open for discussion because of this. Is IDF the people he needs to talk to

regarding this? I am upset he is taking away my options. There are not a lot

of immunologist to switch to in town!

_____

From: [mailto: ] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 5:39 PM

Subject: RE: Insurance

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf

Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

groups (DOT) <mailto:%40> com

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net>

groups (DOT) <mailto:%40> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

How about traveling to one? We drive 3 hours to ours, actually it would be a 3

hour drive in either direction for us but its worth it. I know some families

drive even further to see a good Dr.

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Tue, April 20, 2010 5:48:25 PM

Subject: RE: Insurance

One more question, why do some Dr's not have a problem with using something

that is not FDA approved? My Dr is acting like it is absolutely not even

open for discussion because of this. Is IDF the people he needs to talk to

regarding this? I am upset he is taking away my options. There are not a lot

of immunologist to switch to in town!

_____

From: [mailto: ] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 5:39 PM

Subject: RE: Insurance

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf

Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

groups (DOT) <mailto:%40> com

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net>

groups (DOT) <mailto:%40> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

How about traveling to one? We drive 3 hours to ours, actually it would be a 3

hour drive in either direction for us but its worth it. I know some families

drive even further to see a good Dr.

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Tue, April 20, 2010 5:48:25 PM

Subject: RE: Insurance

One more question, why do some Dr's not have a problem with using something

that is not FDA approved? My Dr is acting like it is absolutely not even

open for discussion because of this. Is IDF the people he needs to talk to

regarding this? I am upset he is taking away my options. There are not a lot

of immunologist to switch to in town!

_____

From: [mailto: ] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 5:39 PM

Subject: RE: Insurance

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: groups (DOT) <mailto:%40> com

[mailto:groups (DOT) <mailto:%40> com] On Behalf

Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

groups (DOT) <mailto:%40> com

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

________________________________

From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net>

groups (DOT) <mailto:%40> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

While FDA approval is important, but with your current insurance (and Immuno

doc) is Gammagard on the formulary for Sub-Q? I know for us it is (United

Health Care). I think this alone speaks volumes.

There are often meds that are used for different purposes than approved by

the FDA, because they have medicinal value to treat other symptoms. If your

insurance approves Gammagard for Sub-Q then your doctor should ease off. Or,

go for a second opinion to a doctor who relates more to your personal

circumstances and meets your (and your child's needs).

If it were us, I am not sure that I would accept an " the FDA hasn't approved

it for that purpose yet " response.

[Guest guest]

While FDA approval is important, but with your current insurance (and Immuno

doc) is Gammagard on the formulary for Sub-Q? I know for us it is (United

Health Care). I think this alone speaks volumes.

There are often meds that are used for different purposes than approved by

the FDA, because they have medicinal value to treat other symptoms. If your

insurance approves Gammagard for Sub-Q then your doctor should ease off. Or,

go for a second opinion to a doctor who relates more to your personal

circumstances and meets your (and your child's needs).

If it were us, I am not sure that I would accept an " the FDA hasn't approved

it for that purpose yet " response.

[Guest guest]

Even one other immunologist that you find to do a better job meeting your needs

and listening to you would be worth a try if you feel strongly about using the

Gammagard. You can get your insurance to pay for it if you want a second

opinion. It is required by law and I encourage everyone to get a second opinion.

The only other thought I had was that I am an RN and was adamant that my son

needed to have a port 11 years ago when we started with IV infusions. I could

not imagine that he would do well without it. But.... we did every 3 week

infusions for 6 years without but a couple of times that the starts were very

difficult. ( usually when he was sick or had been on steroids for his asthma) So

even though I was in the field I was thankful that our Dr. wanted us to try

doing infusions without a port since in the end it was the best for my son. I

would talk candidly with the doctor about your " real concerns " . If he is a good

doctor he will take you seriously and help it be a win win agreement at the end

of the conversation. Also, bring the magazine in to show him where you are

going for information within the field. Also down load info from IDF that you

feel that may be helpful about Sub Q. Your doctor must have very little

experience with sub Q or none. It is a

matter of comfort level for most of these guys as well as a concern about using

off label uses for meds since he possibly could be sued for using an non FDA

approved med for Sub Q. It has been an issue for years. The interesting things

is that Viva has only been around for a few years and Gamma gard for MUCH longer

and has been used in Europe for years. Vivaglobin has worked well for many

people so it is hard to know how your son would respond.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Tue, April 20, 2010 5:58:54 PM

Subject: Re: Insurance

How about traveling to one? We drive 3 hours to ours, actually it would be a 3

hour drive in either direction for us but its worth it. I know some families

drive even further to see a good Dr.

____________ _________ _________ __

From: Carie <itsallaboutkreed@ cox.net>

groups (DOT) com

Sent: Tue, April 20, 2010 5:48:25 PM

Subject: RE: Insurance

One more question, why do some Dr's not have a problem with using something

that is not FDA approved? My Dr is acting like it is absolutely not even

open for discussion because of this. Is IDF the people he needs to talk to

regarding this? I am upset he is taking away my options. There are not a lot

of immunologist to switch to in town!

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 5:39 PM

groups (DOT) com

Subject: RE: Insurance

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On Behalf

Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

____________ _________ _________ __

From: Carie <itsallaboutkreed@ <mailto:itsallabout kreed%40cox. net> cox.net>

groups (DOT) <mailto:% 40groups. com> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

Even one other immunologist that you find to do a better job meeting your needs

and listening to you would be worth a try if you feel strongly about using the

Gammagard. You can get your insurance to pay for it if you want a second

opinion. It is required by law and I encourage everyone to get a second opinion.

The only other thought I had was that I am an RN and was adamant that my son

needed to have a port 11 years ago when we started with IV infusions. I could

not imagine that he would do well without it. But.... we did every 3 week

infusions for 6 years without but a couple of times that the starts were very

difficult. ( usually when he was sick or had been on steroids for his asthma) So

even though I was in the field I was thankful that our Dr. wanted us to try

doing infusions without a port since in the end it was the best for my son. I

would talk candidly with the doctor about your " real concerns " . If he is a good

doctor he will take you seriously and help it be a win win agreement at the end

of the conversation. Also, bring the magazine in to show him where you are

going for information within the field. Also down load info from IDF that you

feel that may be helpful about Sub Q. Your doctor must have very little

experience with sub Q or none. It is a

matter of comfort level for most of these guys as well as a concern about using

off label uses for meds since he possibly could be sued for using an non FDA

approved med for Sub Q. It has been an issue for years. The interesting things

is that Viva has only been around for a few years and Gamma gard for MUCH longer

and has been used in Europe for years. Vivaglobin has worked well for many

people so it is hard to know how your son would respond.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Tue, April 20, 2010 5:58:54 PM

Subject: Re: Insurance

How about traveling to one? We drive 3 hours to ours, actually it would be a 3

hour drive in either direction for us but its worth it. I know some families

drive even further to see a good Dr.

____________ _________ _________ __

From: Carie <itsallaboutkreed@ cox.net>

groups (DOT) com

Sent: Tue, April 20, 2010 5:48:25 PM

Subject: RE: Insurance

One more question, why do some Dr's not have a problem with using something

that is not FDA approved? My Dr is acting like it is absolutely not even

open for discussion because of this. Is IDF the people he needs to talk to

regarding this? I am upset he is taking away my options. There are not a lot

of immunologist to switch to in town!

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 5:39 PM

groups (DOT) com

Subject: RE: Insurance

I will take Ig living with me, but would you let me know why? Am I supposed

to be showing the Dr something in it in particular?

Thank you for your reply, it was helpful, and calmed me down!

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On Behalf

Of

Barbara Jimenez

Sent: Tuesday, April 20, 2010 5:22 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Re: Insurance

Hello Carie, I can understand your frustration. But... keep a couple of

things in mind. 1st. the person you talked to really had NO say in what

happens to your son. She may not even be an RN or someone with any specific

knowledge about this issue. She sounds very ignorant. I would encourage you

to take the Ig Living magazine with you and to talk to the Dr. directly. He

has a responsibility to discuss this with you and to help you make the right

choices for your son. Gammagard is being used all over the country for sub

Q. I lived in Oklahoma for the past 3 years and they refused to use Viva

because of the expense. I live in WA state now and we are still using

Gammagard. In my son's case he did not have IgA so it was a matter of safety

but for us it has worked great. With the problems getting Viva being

imminent it may make it easier for you to get the Gammagard approved. Just

go in with LOTS of questions written down and ask him to contact IDF prior

to

making a final decision. He has a responsibility to explore it with you.

Forget the nurse she sounds ignorant and irresponsible in her responses.

This is NOT a chat room but a group of over 100 families that are LIVING

with the ins and outs of immune deficiency in children. If nothing else the

topics we discuss are an excellent source to look at what is specifically

important for these kids in the field. We see the good, bad and the ugly.

What you are doing is advocating for your child, if you do not do it NO ONE

else will. They may not agree with you but you have the right to ask the

questions and have them answered with references.

As far as the insurance I do not think you will find in MAJOR problems with

them except getting into the system and finding all of your resources. It

will take time. We had several insurances in the past and finally stayed

with Medicaid only since it was taking care of his needs. I do not find it

any harder to deal with than " other " programs except that I have RECOURSE

since it is a Federal/State program. It is harder to hold private insurances

accountable to the law. ( my opinion)

____________ _________ _________ __

From: Carie <itsallaboutkreed@ <mailto:itsallabout kreed%40cox. net> cox.net>

groups (DOT) <mailto:% 40groups. com> com

Sent: Tue, April 20, 2010 4:48:54 PM

Subject: RE: Insurance

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On

Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

My son is 18. He did ONLY Gammagard S/D for 8 yrs. of doing IVIG....He was

switched to Gammagard Liquid, but suffered 3 bouts of Aseptic menegitis before

the Hspital pharmacy let us(mom & Blake) & Blake's Dr. know it was

changed....they admitted the change after Blake's 3rd time in the hospital

becuse of the AM.2.5 yrs. ago Blake was swithched to Sub-Q after he nearly died

from DIC. Which ws brought on by having a central line in his chest(he had had

one since the age of 3). We went with VIVA.....

Blake IS one of the noted & documented cases of Neuro issues as well as

Anaphalactic reactions...

Blake's Immunologist as well as his Pediatrician(Who by the way was/is the only

Pediatrician in our area to even be aware of Sub-Q...she is the first trained

Peds. in Sub-Q IG Therapy), both we willing to go to bat for Blake & get his

Gammagard S/D for him to use for sub-q. Blake has NO IgA and now has the ANti

IgA Antibody. Both gave to the FDA what they called a Plea of Medical Mercy for

Blake.  The Baxter Company Dr. also backed up Blake's case..In 2 weeks Blake

was granted the Plea & we started Gammagrd S/D for sub-q & have not had to look

back....it i often said  " If it's not broken, don't fix it " in Blake's

case...It WAS Broken & It got fixed. 

 

I Can on say it is this way for everyone, just our case worked the way it has. 

I would do it aain no matter what it takes to he,p Blake have a greater chance

of survival......

 ,

mom to Blake 18

severe Combined Immunodeficiencywith Complete T-Cell Dysfunction

http://www.caringbridge.org/visit/thetalesofblake

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Carie <itsallaboutkreed@...>

Subject: RE: Insurance

Date: Tuesday, April 20, 2010, 7:48 PM

 

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

My son is 18. He did ONLY Gammagard S/D for 8 yrs. of doing IVIG....He was

switched to Gammagard Liquid, but suffered 3 bouts of Aseptic menegitis before

the Hspital pharmacy let us(mom & Blake) & Blake's Dr. know it was

changed....they admitted the change after Blake's 3rd time in the hospital

becuse of the AM.2.5 yrs. ago Blake was swithched to Sub-Q after he nearly died

from DIC. Which ws brought on by having a central line in his chest(he had had

one since the age of 3). We went with VIVA.....

Blake IS one of the noted & documented cases of Neuro issues as well as

Anaphalactic reactions...

Blake's Immunologist as well as his Pediatrician(Who by the way was/is the only

Pediatrician in our area to even be aware of Sub-Q...she is the first trained

Peds. in Sub-Q IG Therapy), both we willing to go to bat for Blake & get his

Gammagard S/D for him to use for sub-q. Blake has NO IgA and now has the ANti

IgA Antibody. Both gave to the FDA what they called a Plea of Medical Mercy for

Blake.  The Baxter Company Dr. also backed up Blake's case..In 2 weeks Blake

was granted the Plea & we started Gammagrd S/D for sub-q & have not had to look

back....it i often said  " If it's not broken, don't fix it " in Blake's

case...It WAS Broken & It got fixed. 

 

I Can on say it is this way for everyone, just our case worked the way it has. 

I would do it aain no matter what it takes to he,p Blake have a greater chance

of survival......

 ,

mom to Blake 18

severe Combined Immunodeficiencywith Complete T-Cell Dysfunction

http://www.caringbridge.org/visit/thetalesofblake

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: Carie <itsallaboutkreed@...>

Subject: RE: Insurance

Date: Tuesday, April 20, 2010, 7:48 PM

 

I just talked to my Immunologist IVIG nurse. I wanted to ask him what he

thought of my options and get a feel for what the Dr would say to me

tomorrow so I could go in more prepared. I really would be more then happy

to consider SCIG but my Dr's office is 100% opposed to using Gammagard

liquid for it due to it not being FDA approved. I asked if they would speak

to IDF and get information and they said absolutely not since it is not FDA

approved. My child has had severe reactions to any other brand but

Gammagard. He does not have even one reaction to it at all. I am not willing

to put him through a " trial " of Viva and get the same bad reaction. I told

the nurse some reactions I had heard about with Viva and the nurse told me

they are untrue, and if I am hearing this through a " chat " room then to not

believe anything they are saying.

Truly, I hate when a Dr. office treats me this way, like I am an idiot, and

can't think for myself and that they know better for my child. I am so

frustrated, and am not looking forward to going into my appt tomorrow. It

looks like my only option is only having state insurance for my son, and

continuing with IVIG infusions through my current Home agency because no one

is capable of being open minded. I would like to have Medicaid not be my

son's primary and only insurance, but I feel like I am being forced to make

this decision.

Thank you all for all of your information it has been so helpful, and I

appreciate it so much.

By the way I did not name the group or names or anything to my nurse, I only

brought up reactions ect that I had heard about.

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

Carie

Sent: Tuesday, April 20, 2010 7:57 AM

groups (DOT) com

Subject: RE: Insurance

Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about

learning how to do it, doesn't your health home care agency teach you how?

What if I do not have them anymore due to my insurance ending with them May

1st? I go to my immunologist tomorrow and want to be informed and prepared

when I talk to him about my options, which don't seem to promising at this

point! In the past he would said using Gammagard for SCIG was not even an

option for him, so I feel kind of out of options. I feel like my options are

to only have Medicaid and to not put my child on our new insurance. I really

hate to do this, but it is the only way I am guaranteed to keep my home

agency and my brand of product for my son. Why does everything have to

always be so difficult?

_____

From: groups (DOT) <mailto:% 40groups. com> com

[mailto:@ groups. <mailto:% 40groups. com> com] On Behalf

Of

carievercelli

Sent: Sunday, April 18, 2010 1:25 PM

groups (DOT) <mailto:% 40groups. com> com

Subject: Insurance

I do not know what to do. We lose our cobra insurance in a couple of weeks,

and will be left with only our state insurance. We have an opportunity

through my husbands work to get new insurance, but no home care angency's

take both the new insurance and my secondary state insurance. If I don't put

him on our new insurance then I can use our current home agency of 3 years,

but it is a scary thought to only have medicaid for him, and not two

insurances for him like we have always had. If we put him on our new

insurance then it will be considered our primary insurance and not one home

care agency takes it and also our secondary insurance so we would be forced

to cover the rest.

Did all that make sense? We get IVIG every month and could never afford to

pay the rest anyway. I just do not know what to do. I am assuming that the

hospitals take both insurances, but we used to do our infusions at the

hospital and it was nightmarish! My son has a metabolic disorder also, and

is nonverbal with autism, and he refuses to eat when we go to the hospital

and his blood sugar drops and they also can never get his vein (he is a hard

stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It

really is very stressful for him to not have it at home. They also will not

guarentee he will get his brand of IVIG that he needs, and he has had severe

reactions to other brands, so this is not even an option for us.

Any ideas? We have to make a decision by the end of the month. Thanks

Carie mom to Kreed 12

CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism,

possible NIPBL, and mito.

[Guest guest]

,

May I ask what kind of neuro issue did he have?

Janet, mom to Brittany age 19, CVID, Uriticaria & Angioedema, Vitamin D

Def, Secondary Hyperparathyroidism

Blake IS one of the noted & documented cases of Neuro issues

[Guest guest]

What do you mean 3 Ud studies? What's a study?Sent from my iPhoneOn Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> wrote:

That is correct. Insurance companies require 3 Us studies to be done before they will start to cover it under mehta casting. Until then risser casting must be used.

Jenn

Mommy to cole and max

[Guest guest]

Hello! Sierra is in her 3rd Mehta Cast! BCBS of Alabama has payed for everything 100% including the Mehta cast! However, they coverage of the code using "the manipulation of her spine". I have been in the appeals process with them since April. Dr. K sent in all her medical record & a letter stating that unless casted it would case BCBS way more down the line. He also put in the letter showing how Sierra's degree of curve has went from 34 degrees down to 17 in cast! I found out Friday that BCBS of Alabama approved our appeal & have agreed to pay 100%. We ate thrilled! With the help of Dr. & his letter & also my letter all helped in the process! Just wanted to shareKristi Mommy to Sierra 16 mo. 3rd cast 34 degrees down to 17 in cast.Sent From Kristi's i-PhoneOn Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> wrote:

That is correct. Insurance companies require 3 Us studies to be done before they will start to cover it under mehta casting. Until then risser casting must be used.

Jenn

Mommy to cole and max

[Guest guest]

So happy to hear that you were able to get this taken care of and it's fully covered! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: Kristi <kristij@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Mon,

August 23, 2010 9:47:14 AMSubject: Re: INsurance

Hello! Sierra is in her 3rd Mehta Cast! BCBS of Alabama has payed for everything 100% including the Mehta cast! However, they coverage of the code using "the manipulation of her spine". I have been in the appeals process with them since April. Dr. K sent in all her medical record & a letter stating that unless casted it would case BCBS way more down the line. He also put in the letter showing how Sierra's degree of curve has went from 34 degrees down to 17 in cast! I found out Friday that BCBS of Alabama approved our appeal & have agreed to pay 100%. We ate thrilled! With the help of Dr. & his letter & also my letter all helped in the process! Just wanted to shareKristi Mommy to Sierra 16 mo. 3rd cast 34 degrees down to 17 in cast.Sent From Kristi's i-PhoneOn Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> wrote:

That is correct. Insurance companies require 3 Us studies to be done before they will start to cover it under mehta casting. Until then risser casting must be used.

Jenn

Mommy to cole and max

[Guest guest]

Thanks for sharing that Kristi. This is a great example of the doc going

to bat! Excellent.

> Hello! Sierra is in her 3rd Mehta Cast! BCBS of Alabama has payed for

> everything 100% including the Mehta cast! However, they coverage of the

> code using " the manipulation of her spine " . I have been in the appeals

> process with them since April. Dr. K sent in all her medical record & a

> letter stating that unless casted it would case BCBS way more down the

> line. He also put in the letter showing how Sierra's degree of curve has

> went from 34 degrees down to 17 in cast! I found out Friday that BCBS of

> Alabama approved our appeal & have agreed to pay 100%. We ate thrilled!

> With the help of Dr. & his letter & also my letter all helped in the

> process! Just wanted to share

> Kristi Mommy to Sierra 16 mo. 3rd cast 34 degrees down to 17 in cast.

>

> Sent From Kristi's i-Phone

>

> On Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...>

> wrote:

>

>> That is correct. Insurance companies require 3 Us studies to be done

>> before they will start to cover it under mehta casting. Until then

>> risser casting must be used.

>>

>> Jenn

>> Mommy to cole and max

>>

>>

>

[Guest guest]

Just take Medicare Part D. I personally chose an advantage plan which was more expensive but my prescription costs are high and I need complete freedom to see any doctor I want.You can compare Medicare Part D programs in your area:http://www.medicare.gov/medicarereform/drugbenefit.asp Regards, VergelPoWeRUSA.orgFrom: King <ringaking@...> Sent: Tue, November 23, 2010 7:35:56 PMSubject: Insurance

I have been on my husbands insurance but he will be laid off at the end of the year. I am trying to decide which insurance to go with. I am on disability & 61 yrs old. United? Humana? AARP? And if I go with one of these & my HIV drugs are Tier 4 do I also take Part D on Medicare?? Confused in Atlanta area ------------------------------------Welcome to our group!If you received this email from someone who forwarded it to you and would like to join this group, send a blank email to -subscribe and you will get an email with instructions to follow.You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the

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[Guest guest]

Beyond PIP, this is what personal health is up to:

http://www.propublica.org/article/senate-bill-could-roll-back-consumers-health-insurance-savings Seitz, DC Tuality Physicians 730-D SE Oak St Hillsboro, OR 97123 (503)640-3724