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>

> Does anybody carry insurance? Where's a good place to start looking?

> Maggie

>

HiMaggie, I'm actually a commercial insurance agent. I recommend making your

agent do the footwork. You would like for them to do the comparison shopping

for you; commercial insurance is really complicated. It is imperative to have

an agent you trust -- this is not something I would do myself, say, by Internet.

If your agent is not asking you tons of specific questions when you do the

application, you may want to comparison shop, yourself... every commercial

policy is different and is tailored from the ground up for the client.

Heck, if you're in California, let me know and I'll help you. :)

Here are some guidelines I am personally considering:

General liability:

You will want adequate products/completed operations coverage so that if there

is ever a lawsuit brought by someone claiming to be harmed by your products, you

are protected.

You will want adequate coverage for personal and advertising injury, in case you

accidentally infringe someone's copyright or ads and are sued.

You will want tenants liability coverage in case you or your products cause

damage to the building you are in (say, through a fire). You may also want to

raise your medical payments limit from the default.

Property:

If you want coverage for your inventory, equipment, or other property in your

lab (including computers) you should discuss this with your agent. Be very

specific. Be aware that this coverage will, in part, drive your premium, so it

is up to you. While you are looking at this limit, be aware of your

deductible... raising your deductible lowers your premium, but also lowers your

coverage if there is ever a claim.

E & O (professional liability):

You may also want professional liability insurance to cover your business

operations, but it will be rather costly. I am personally going to skip it.

Workers' compensation:

In the U.S., you MUST maintain workers' compensation insurance if you have

employees. Theoretically even volunteer employees must be insured. If you have

family members working for you and they are not part owners of your business,

they are also supposed to be insured. Penalties can be heavy if you don't

insure your employees. Please let me know if you have questions, but understand

that my knowledge is limited to California codes.

Hope this helps!

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Does anybody carry insurance? Where's a good place to start looking?

Maggie

***************************************************

Hi Maggie,

Check out IBN (Indie Beauty Network). If you get a membership you can get

insurance through them. I did it and saved beaucoup bucks over the insurance I

had before. I think this is because it is written as a group policy for IBN,

rather than an individual policy. But coverage limits are still applied to your

own policy (endorsement?)

I have never had a claim, so I can't speak to their claim handling capacity, but

so far, they have been responsive to my requests for documents that I have

requested.

Patty

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> Heck, if you're in California, let me know and I'll help you. :)

>

> General liability

> Property

> E & O (professional liability)

> Workers' compensation

Thank you so much for your detailed answers to all of the above issues and more!

I am, in fact in CA so perhaps we could contact eachother offline. My email is

mmahboubian@....

Thanks again for your response!

Maggie

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>

>

>

> Does anybody carry insurance? Where's a good place to start looking?

> Maggie

>

>

> ***************************************************

>

> Hi Maggie,

>

> Check out IBN (Indie Beauty Network). If you get a membership you can get

insurance through them. I did it and saved beaucoup bucks over the insurance I

had before. I think this is because it is written as a group policy for IBN,

rather than an individual policy. But coverage limits are still applied to your

own policy (endorsement?)

>

> I have never had a claim, so I can't speak to their claim handling capacity,

but so far, they have been responsive to my requests for documents that I have

requested.

>

> Patty

Thanks so much Patty for your info on IBN. I remember reading about them and it

seems like a good place to start. I will definitely research their membership

and insurance options!

Best,

Maggie

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> I incorporated Mermade so that if we got sued they could only take our

> inventory and business account. this was our belief anyway....

>

> Katlyn Breene

> Mermade Magickal Arts (since 1984)

> katmermade@...

> http://www.mermadearts.com/

I incorporated my architectural practice for that reason, but I also got " E & O "

(errors and omissions) insurance in case I got sued. Supposedly the insurance

would cover the amount in a potential law suit. Otherwise, it would have to

come out of my pocket! I imagine it's the same situation if you're selling a

product.

Maggie

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  • 11 months later...
Guest guest

What state are you in ????? I know some states have Special Children's

Healthcare... It helps cover anything medical expensives that are left over from

private or state insurance.... Its a differnt program then your state insurance

and is usualy run through your local Health Dept. not the DHS office....  I

would check with them to start because even if they couldn't help they could

point you in the right direction

 

From: carievercelli <itsallaboutkreed@...>

Subject: Insurance

Date: Sunday, April 18, 2010, 4:25 PM

 

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.

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IVIG is covered at 100% in all 50 states through medicaid in hospital. Have you

considered switching to SCIG? You would no longer need private nursing and its

very easy to get approval for SCIG when coming from IV. Some states actually

mandate SCIG over IV due to cost savings from what I have heard. I know dd's

IVIG was costing $4k mo at the hospital and that was before we doubled the dose.

When we switched to SCIG at home the cost dropped to $1200 mo which is just the

cost of the drug, Nufactor includes everything else with it.

________________________________

From: carievercelli <itsallaboutkreed@...>

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

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.

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages

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Guest guest

Yes you do, all states do, you just have to know where to look:)

http://www.azdhs.gov/phs/ocshcn/crs/crs_az.htm

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:01:19 PM

Subject: RE: Insurance

Arizona, we do not have what you are talking about.

_____

From: [mailto: ] On Behalf Of

aymee

Sent: Sunday, April 18, 2010 1:31 PM

Subject: Re: Insurance

What state are you in ????? I know some states have Special Children's

Healthcare... It helps cover anything medical expensives that are left over

from private or state insurance.... Its a differnt program then your state

insurance and is usualy run through your local Health Dept. not the DHS

office.... I would check with them to start because even if they couldn't

help they could point you in the right direction

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

cox.net>

Subject: Insurance

groups (DOT) <mailto:%40> com

Date: Sunday, April 18, 2010, 4:25 PM

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.

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Guest guest

As we learned EVERY state writes its own rules. There are state laws that write

the rules regarding how the Federal funds are implemented. We at this time only

have Medicaid in WA state and we do fine. It just takes a little more work to

get a state care manager to reduce risk. I would also encourage you to contact

IDF and see if someone there can help you. I thought that if my son was on SSI

that he would have insurance ( medicare or Medicaid) but there are 3 states do

not give kids Medicaid even if they are on SSI. We moved back to WA state

because my son could not get ANY insurance in Oklahoma even on SSI. Also if you

are on Medicaid they cannot charge you co-pays for anything if it is something

that Medicaid does pay even if your primary does not pay for it. It is complex

but personally I see some relief in the future especially for our

kids.(September)

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 1:33:35 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have you

considered switching to SCIG? You would no longer need private nursing and its

very easy to get approval for SCIG when coming from IV. Some states actually

mandate SCIG over IV due to cost savings from what I have heard. I know dd's

IVIG was costing $4k mo at the hospital and that was before we doubled the dose.

When we switched to SCIG at home the cost dropped to $1200 mo which is just the

cost of the drug, Nufactor includes everything else with it.

____________ _________ _________ __

From: carievercelli <itsallaboutkreed@ cox.net>

groups (DOT) com

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups. / group//

messages

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Guest guest

Arizona, we do not have what you are talking about.

_____

From: [mailto: ] On Behalf Of

aymee

Sent: Sunday, April 18, 2010 1:31 PM

Subject: Re: Insurance

What state are you in ????? I know some states have Special Children's

Healthcare... It helps cover anything medical expensives that are left over

from private or state insurance.... Its a differnt program then your state

insurance and is usualy run through your local Health Dept. not the DHS

office.... I would check with them to start because even if they couldn't

help they could point you in the right direction

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

cox.net>

Subject: Insurance

groups (DOT) <mailto:%40> com

Date: Sunday, April 18, 2010, 4:25 PM

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.

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Guest guest

Actually SOME states do and it looks like the good news is that Arizonia does

have a program. EVERY state is different. I went to EVERY possible

agency,legislator(state and Federal) ,DHS, Health Care Authority in OK and was

told to leave the state or my son would die. They do not have ANY program for

kids in my sons situation. He is on SS but there is NO health insurance for him

since he has a pre-existing condition. My only income is SSDI so I am NOT

wealthy. I am working with the NPAF national Patient Advocacy Foundation to see

why some of the National programs that are law for kids are not being

implemented in states like Oklahoma. It is a HUGE hole in the system. My son

could have died if I stayed in OK and there are 3 other states that have similar

laws.

BARBIE

________________________________

From: Madden <bluetaelon@...>

Sent: Sun, April 18, 2010 1:54:23 PM

Subject: Re: Insurance

Yes you do, all states do, you just have to know where to look:)

http://www.azdhs. gov/phs/ocshcn/ crs/crs_az. htm

____________ _________ _________ __

From: Carie <itsallaboutkreed@ cox.net>

groups (DOT) com

Sent: Sun, April 18, 2010 2:01:19 PM

Subject: RE: Insurance

Arizona, we do not have what you are talking about.

_____

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

aymee

Sent: Sunday, April 18, 2010 1:31 PM

groups (DOT) com

Subject: Re: Insurance

What state are you in ????? I know some states have Special Children's

Healthcare.. . It helps cover anything medical expensives that are left over

from private or state insurance... . Its a differnt program then your state

insurance and is usualy run through your local Health Dept. not the DHS

office.... I would check with them to start because even if they couldn't

help they could point you in the right direction

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

cox.net>

Subject: Insurance

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

Date: Sunday, April 18, 2010, 4:25 PM

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.

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Guest guest

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

From: [mailto: ] On Behalf Of

Madden

Sent: Sunday, April 18, 2010 1:34 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

________________________________

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

cox.net>

groups (DOT) <mailto:%40> com

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

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.

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: http://groups.

</messages>

/group//messages

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Guest guest

We have familes with autism who do SCIG, perhaps they will weigh in:) We did

Gammagard for IV then switched to Gamunex for SCIG without a problem which many

people use. I " think " Viva is the only SCIG thats FDA approved but thats pretty

recent, people have been using other products for decades without a problem.

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:06:09 PM

Subject: RE: Insurance

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

From: [mailto: ] On Behalf Of

Madden

Sent: Sunday, April 18, 2010 1:34 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

________________________________

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

cox.net>

groups (DOT) <mailto:%40> com

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

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.

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: http://groups.

</messages>

/group//messages

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Guest guest

We use Gammagard SD SubQ. I can see your hesitation and it may not work. My son

has emotional issues too. We did it at night with a mild sedative. (Benadryl) I

would wait until he went to sleep and put some emla on and do it. It only takes

a little over an hour. But.... as he got older(12) it became a bigger issue and

we had to work out another plan. He is 14 now and is willing to do it but my son

is high functioning. Oh we also use only 2 sites. He was suppose to use 4 but

refused. We use 30cc per site with NO problems. It hardly turns red now after 4

years.

BARBIE

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:06:09 PM

Subject: RE: Insurance

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

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

Madden

Sent: Sunday, April 18, 2010 1:34 PM

groups (DOT) com

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

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

cox.net>

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

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups.

<http://groups. / group// messages>

/group/ /messagesY ahoo! Groups Links

Link to comment
Share on other sites

Guest guest

Actually since it is state government the rules in are in writing if you can get

the RIGHT people to talk to . I would call the state Department of Health ( or

contact the people that showed you) ask them to do a review of what your

choices include for his specific services. Like Pre-authorizing and see what it

would cost you to be on it or not. It will take your time but at least you will

know what your options are. I would keep calling to talk to someone that is

willing to help you figure this out. There are some GREAT people working for the

state but also some burned out souls. I am not talking about talking to the

local dshs office but actually a nurse.

BARBIE

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:18:08 PM

Subject: RE: Insurance

Yes, that's right they do not charge you for co-pays, but they also will not

cover things if your primary insurance could cover it first, so if we had a

primary insurance and our home care agency will not take that primary

insurance then we are forced to go to a place that does take it, but there

is no place that takes our primary insurance that also takes our Medicaid

too, so we would be stuck paying the leftover balance or we have to not put

him on the primary so that we can use only our Medicaid.

Having Medicaid only really limits you. They also tend to deny a lot (at

least here) and they say they are impossible to fight. We have been really

confused with what is the best thing to do.

_____

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

Barbara Jimenez

Sent: Sunday, April 18, 2010 1:58 PM

groups (DOT) com

Subject: Re: Insurance

As we learned EVERY state writes its own rules. There are state laws that

write the rules regarding how the Federal funds are implemented. We at this

time only have Medicaid in WA state and we do fine. It just takes a little

more work to get a state care manager to reduce risk. I would also encourage

you to contact IDF and see if someone there can help you. I thought that if

my son was on SSI that he would have insurance ( medicare or Medicaid) but

there are 3 states do not give kids Medicaid even if they are on SSI. We

moved back to WA state because my son could not get ANY insurance in

Oklahoma even on SSI. Also if you are on Medicaid they cannot charge you

co-pays for anything if it is something that Medicaid does pay even if your

primary does not pay for it. It is complex but personally I see some relief

in the future especially for our kids.(September)

BARBIE

____________ _________ _________ __

From: Madden <bluetaelon@ att. <mailto:bluetaelon% 40att.net> net>

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

Sent: Sun, April 18, 2010 1:33:35 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

From: carievercelli <itsallaboutkreed@ cox.net>

groups (DOT) com

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups. / group//

messages

Link to comment
Share on other sites

Guest guest

Really? Here they cover MORE then the crappy HMO they make everyone get. dd just

qualified for SSI and I'm moving her to straight Medi-cal (medicaid) because it

covers more then the HMO.

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:18:08 PM

Subject: RE: Insurance

Yes, that's right they do not charge you for co-pays, but they also will not

cover things if your primary insurance could cover it first, so if we had a

primary insurance and our home care agency will not take that primary

insurance then we are forced to go to a place that does take it, but there

is no place that takes our primary insurance that also takes our Medicaid

too, so we would be stuck paying the leftover balance or we have to not put

him on the primary so that we can use only our Medicaid.

Having Medicaid only really limits you. They also tend to deny a lot (at

least here) and they say they are impossible to fight. We have been really

confused with what is the best thing to do.

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 1:58 PM

Subject: Re: Insurance

As we learned EVERY state writes its own rules. There are state laws that

write the rules regarding how the Federal funds are implemented. We at this

time only have Medicaid in WA state and we do fine. It just takes a little

more work to get a state care manager to reduce risk. I would also encourage

you to contact IDF and see if someone there can help you. I thought that if

my son was on SSI that he would have insurance ( medicare or Medicaid) but

there are 3 states do not give kids Medicaid even if they are on SSI. We

moved back to WA state because my son could not get ANY insurance in

Oklahoma even on SSI. Also if you are on Medicaid they cannot charge you

co-pays for anything if it is something that Medicaid does pay even if your

primary does not pay for it. It is complex but personally I see some relief

in the future especially for our kids.(September)

BARBIE

________________________________

From: Madden <bluetaelonatt (DOT) <mailto:bluetaelon%40att.net> net>

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 1:33:35 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

From: carievercelli <itsallaboutkreed@ cox.net>

groups (DOT) com

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups. / group//

messages

Link to comment
Share on other sites

Guest guest

He could talk to our OK immunologist or even our current one or even call IDF.

It is being used all over the country. We were not given an option to use

Vivaglobin since my son had no IgA. It has been used in Europe for over 25 years

sub Q.

BARBIE

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:21:24 PM

Subject: RE: Insurance

How do you get your Doctor to agree to use Gammgard for SCIG if it is not

FDA approved? I have asked and he didn't even seem to know it was an option?

Does he contact someone?

_____

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

Madden

Sent: Sunday, April 18, 2010 2:07 PM

groups (DOT) com

Subject: Re: Insurance

We have familes with autism who do SCIG, perhaps they will weigh in:) We did

Gammagard for IV then switched to Gamunex for SCIG without a problem which

many people use. I " think " Viva is the only SCIG thats FDA approved but

thats pretty recent, people have been using other products for decades

without a problem.

____________ _________ _________ __

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

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

Sent: Sun, April 18, 2010 2:06:09 PM

Subject: RE: Insurance

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

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

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

Of

Madden

Sent: Sunday, April 18, 2010 1:34 PM

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

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

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

cox.net>

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

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups.

<http://groups. <http://groups. / group// messages>

/group/ /messagesY ahoo>

/group/ /messagesY ahoo! Groups Links

Link to comment
Share on other sites

Guest guest

Quick google search " Gammagard scig " shows Gammagard can be and is used for

SCIG:)

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:23:54 PM

Subject: RE: Insurance

I would really be open to this option, but only if I could use Gammagard

like I have been using. I would really need someone to help me that knows

what they are doing, and our home nurse of 3 years just left due to medical

issues for himself, so my new nurse does not know how my child well enough

to help me.

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 2:08 PM

Subject: Re: Insurance

We use Gammagard SD SubQ. I can see your hesitation and it may not work. My

son has emotional issues too. We did it at night with a mild sedative.

(Benadryl) I would wait until he went to sleep and put some emla on and do

it. It only takes a little over an hour. But.... as he got older(12) it

became a bigger issue and we had to work out another plan. He is 14 now and

is willing to do it but my son is high functioning. Oh we also use only 2

sites. He was suppose to use 4 but refused. We use 30cc per site with NO

problems. It hardly turns red now after 4 years.

BARBIE

________________________________

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

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 2:06:09 PM

Subject: RE: Insurance

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

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

Madden

Sent: Sunday, April 18, 2010 1:34 PM

groups (DOT) com

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

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

cox.net>

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

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups.

<http://groups. / group// messages>

/group/ /messagesY ahoo! Groups Links

Link to comment
Share on other sites

Guest guest

Quick google search " Gammagard scig " shows Gammagard can be and is used for

SCIG:)

________________________________

From: Carie <itsallaboutkreed@...>

Sent: Sun, April 18, 2010 2:23:54 PM

Subject: RE: Insurance

I would really be open to this option, but only if I could use Gammagard

like I have been using. I would really need someone to help me that knows

what they are doing, and our home nurse of 3 years just left due to medical

issues for himself, so my new nurse does not know how my child well enough

to help me.

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 2:08 PM

Subject: Re: Insurance

We use Gammagard SD SubQ. I can see your hesitation and it may not work. My

son has emotional issues too. We did it at night with a mild sedative.

(Benadryl) I would wait until he went to sleep and put some emla on and do

it. It only takes a little over an hour. But.... as he got older(12) it

became a bigger issue and we had to work out another plan. He is 14 now and

is willing to do it but my son is high functioning. Oh we also use only 2

sites. He was suppose to use 4 but refused. We use 30cc per site with NO

problems. It hardly turns red now after 4 years.

BARBIE

________________________________

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

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 2:06:09 PM

Subject: RE: Insurance

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

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

Madden

Sent: Sunday, April 18, 2010 1:34 PM

groups (DOT) com

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

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

cox.net>

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

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups.

<http://groups. / group// messages>

/group/ /messagesY ahoo! Groups Links

Link to comment
Share on other sites

Guest guest

Yes, that's right they do not charge you for co-pays, but they also will not

cover things if your primary insurance could cover it first, so if we had a

primary insurance and our home care agency will not take that primary

insurance then we are forced to go to a place that does take it, but there

is no place that takes our primary insurance that also takes our Medicaid

too, so we would be stuck paying the leftover balance or we have to not put

him on the primary so that we can use only our Medicaid.

Having Medicaid only really limits you. They also tend to deny a lot (at

least here) and they say they are impossible to fight. We have been really

confused with what is the best thing to do.

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 1:58 PM

Subject: Re: Insurance

As we learned EVERY state writes its own rules. There are state laws that

write the rules regarding how the Federal funds are implemented. We at this

time only have Medicaid in WA state and we do fine. It just takes a little

more work to get a state care manager to reduce risk. I would also encourage

you to contact IDF and see if someone there can help you. I thought that if

my son was on SSI that he would have insurance ( medicare or Medicaid) but

there are 3 states do not give kids Medicaid even if they are on SSI. We

moved back to WA state because my son could not get ANY insurance in

Oklahoma even on SSI. Also if you are on Medicaid they cannot charge you

co-pays for anything if it is something that Medicaid does pay even if your

primary does not pay for it. It is complex but personally I see some relief

in the future especially for our kids.(September)

BARBIE

________________________________

From: Madden <bluetaelonatt (DOT) <mailto:bluetaelon%40att.net> net>

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 1:33:35 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

From: carievercelli <itsallaboutkreed@ cox.net>

groups (DOT) com

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups. / group//

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Guest guest

Are you sure about that, Carie? Our primary insurance (BCBS) doesn't pay

for ANY of our home nursing but Medicaid (secondary) does. It could be

different in different states (we're in Indiana) but in our case it has

nothing to do with whether or not the insurance is accepted at the agency

because BCBS wouldn't pay for it period. Have you talked directly with the

nursing agency because I would think they are the ones that would be most

familiar (we have discovered that the Medicaid people don't really know

anything)? Is this for nursing for home IVIG or other home nursing because

maybe that's the difference, too - we have both.

Personally, I love still having the BCBS as primary because when we need to

travel for care or have any other big expenses, I don't deal with the

Medicaid bureaucratic red tape as you mentioned. By the beginning of March

every year, we have met our out of pocket max so Medicaid only pays for our

nursing and our pharmacy co-pays - BCBS pays at 100% of medical once we've

reached the OOP max. Good luck with your decision and good for you for

checking out all benefits and repercussions before making the decision!

Mom to 4, 3 with mito

From: [mailto: ] On Behalf Of

Carie

Sent: Sunday, April 18, 2010 5:18 PM

Subject: RE: Insurance

Yes, that's right they do not charge you for co-pays, but they also will not

cover things if your primary insurance could cover it first, so if we had a

primary insurance and our home care agency will not take that primary

insurance then we are forced to go to a place that does take it, but there

is no place that takes our primary insurance that also takes our Medicaid

too, so we would be stuck paying the leftover balance or we have to not put

him on the primary so that we can use only our Medicaid.

Having Medicaid only really limits you. They also tend to deny a lot (at

least here) and they say they are impossible to fight. We have been really

confused with what is the best thing to do.

_____

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 1:58 PM

<mailto:%40>

Subject: Re: Insurance

As we learned EVERY state writes its own rules. There are state laws that

write the rules regarding how the Federal funds are implemented. We at this

time only have Medicaid in WA state and we do fine. It just takes a little

more work to get a state care manager to reduce risk. I would also encourage

you to contact IDF and see if someone there can help you. I thought that if

my son was on SSI that he would have insurance ( medicare or Medicaid) but

there are 3 states do not give kids Medicaid even if they are on SSI. We

moved back to WA state because my son could not get ANY insurance in

Oklahoma even on SSI. Also if you are on Medicaid they cannot charge you

co-pays for anything if it is something that Medicaid does pay even if your

primary does not pay for it. It is complex but personally I see some relief

in the future especially for our kids.(September)

BARBIE

________________________________

From: Madden <bluetaelonatt (DOT) <mailto:bluetaelon%40att.net> net>

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 1:33:35 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

From: carievercelli <itsallaboutkreed@ cox.net>

groups (DOT) com

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups. / group//

messages

Link to comment
Share on other sites

Guest guest

Are you sure about that, Carie? Our primary insurance (BCBS) doesn't pay

for ANY of our home nursing but Medicaid (secondary) does. It could be

different in different states (we're in Indiana) but in our case it has

nothing to do with whether or not the insurance is accepted at the agency

because BCBS wouldn't pay for it period. Have you talked directly with the

nursing agency because I would think they are the ones that would be most

familiar (we have discovered that the Medicaid people don't really know

anything)? Is this for nursing for home IVIG or other home nursing because

maybe that's the difference, too - we have both.

Personally, I love still having the BCBS as primary because when we need to

travel for care or have any other big expenses, I don't deal with the

Medicaid bureaucratic red tape as you mentioned. By the beginning of March

every year, we have met our out of pocket max so Medicaid only pays for our

nursing and our pharmacy co-pays - BCBS pays at 100% of medical once we've

reached the OOP max. Good luck with your decision and good for you for

checking out all benefits and repercussions before making the decision!

Mom to 4, 3 with mito

From: [mailto: ] On Behalf Of

Carie

Sent: Sunday, April 18, 2010 5:18 PM

Subject: RE: Insurance

Yes, that's right they do not charge you for co-pays, but they also will not

cover things if your primary insurance could cover it first, so if we had a

primary insurance and our home care agency will not take that primary

insurance then we are forced to go to a place that does take it, but there

is no place that takes our primary insurance that also takes our Medicaid

too, so we would be stuck paying the leftover balance or we have to not put

him on the primary so that we can use only our Medicaid.

Having Medicaid only really limits you. They also tend to deny a lot (at

least here) and they say they are impossible to fight. We have been really

confused with what is the best thing to do.

_____

From: <mailto:%40>

[mailto: <mailto:%40> ] On Behalf

Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 1:58 PM

<mailto:%40>

Subject: Re: Insurance

As we learned EVERY state writes its own rules. There are state laws that

write the rules regarding how the Federal funds are implemented. We at this

time only have Medicaid in WA state and we do fine. It just takes a little

more work to get a state care manager to reduce risk. I would also encourage

you to contact IDF and see if someone there can help you. I thought that if

my son was on SSI that he would have insurance ( medicare or Medicaid) but

there are 3 states do not give kids Medicaid even if they are on SSI. We

moved back to WA state because my son could not get ANY insurance in

Oklahoma even on SSI. Also if you are on Medicaid they cannot charge you

co-pays for anything if it is something that Medicaid does pay even if your

primary does not pay for it. It is complex but personally I see some relief

in the future especially for our kids.(September)

BARBIE

________________________________

From: Madden <bluetaelonatt (DOT) <mailto:bluetaelon%40att.net> net>

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 1:33:35 PM

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

____________ _________ _________ __

From: carievercelli <itsallaboutkreed@ cox.net>

groups (DOT) com

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

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.

------------ --------- --------- ------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribe@ groups.

To search group archives go to: http://groups. / group//

messages

Link to comment
Share on other sites

Guest guest

Yes, they do have a CRS program. Does anyone know what this means in terms

of IVIG?

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Sunday, April 18, 2010 2:03 PM

Subject: Re: Insurance

Actually SOME states do and it looks like the good news is that Arizonia

does have a program. EVERY state is different. I went to EVERY possible

agency,legislator(state and Federal) ,DHS, Health Care Authority in OK and

was told to leave the state or my son would die. They do not have ANY

program for kids in my sons situation. He is on SS but there is NO health

insurance for him since he has a pre-existing condition. My only income is

SSDI so I am NOT wealthy. I am working with the NPAF national Patient

Advocacy Foundation to see why some of the National programs that are law

for kids are not being implemented in states like Oklahoma. It is a HUGE

hole in the system. My son could have died if I stayed in OK and there are 3

other states that have similar laws.

BARBIE

________________________________

From: Madden <bluetaelonatt (DOT) <mailto:bluetaelon%40att.net> net>

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 1:54:23 PM

Subject: Re: Insurance

Yes you do, all states do, you just have to know where to look:)

http://www.azdhs. gov/phs/ocshcn/ crs/crs_az. htm

____________ _________ _________ __

From: Carie <itsallaboutkreed@ cox.net>

groups (DOT) com

Sent: Sun, April 18, 2010 2:01:19 PM

Subject: RE: Insurance

Arizona, we do not have what you are talking about.

_____

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

aymee

Sent: Sunday, April 18, 2010 1:31 PM

groups (DOT) com

Subject: Re: Insurance

What state are you in ????? I know some states have Special Children's

Healthcare.. . It helps cover anything medical expensives that are left over

from private or state insurance... . Its a differnt program then your state

insurance and is usualy run through your local Health Dept. not the DHS

office.... I would check with them to start because even if they couldn't

help they could point you in the right direction

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

cox.net>

Subject: Insurance

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

Date: Sunday, April 18, 2010, 4:25 PM

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.

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Share on other sites

Guest guest

How do you get your Doctor to agree to use Gammgard for SCIG if it is not

FDA approved? I have asked and he didn't even seem to know it was an option?

Does he contact someone?

_____

From: [mailto: ] On Behalf Of

Madden

Sent: Sunday, April 18, 2010 2:07 PM

Subject: Re: Insurance

We have familes with autism who do SCIG, perhaps they will weigh in:) We did

Gammagard for IV then switched to Gamunex for SCIG without a problem which

many people use. I " think " Viva is the only SCIG thats FDA approved but

thats pretty recent, people have been using other products for decades

without a problem.

________________________________

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

groups (DOT) <mailto:%40> com

Sent: Sun, April 18, 2010 2:06:09 PM

Subject: RE: Insurance

My child has autism and is nonverbal. I have considered SCIG, but do not

know if I could manage it with him. This is a child that is incredibly

strong and fights any thing being done to him He won't allow bandages on

him, and has instantly removed his stitches on his own. I really do worry

about if SCIG is for us. Also I really would hate to take a chance on using

anything other then Gammagard because he has zero reaction from it, and my

Dr. won't approve using Gammagard for SCIG since it is not FDA approved.

_____

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

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

Of

Madden

Sent: Sunday, April 18, 2010 1:34 PM

groups (DOT) <mailto:%40> com

Subject: Re: Insurance

IVIG is covered at 100% in all 50 states through medicaid in hospital. Have

you considered switching to SCIG? You would no longer need private nursing

and its very easy to get approval for SCIG when coming from IV. Some states

actually mandate SCIG over IV due to cost savings from what I have heard. I

know dd's IVIG was costing $4k mo at the hospital and that was before we

doubled the dose. When we switched to SCIG at home the cost dropped to $1200

mo which is just the cost of the drug, Nufactor includes everything else

with it.

________________________________

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

cox.net>

groups (DOT) <mailto:%40> com

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

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.

------------------------------------

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: http://groups.

<http://groups. </messages>

/group//messages>

/group//messages

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