sticking with IVIG

[Guest guest]

No we have never pre-funded any of our infusions. I think it will be just a

matter of time til your insurance wakes up to the difference in cost by doing

subq at home and IV in a hospital. It is VERY easy to do and for us it has been

great. I understand why you making this decision and the hope will be that if

you ask again in a year they will have it together. We have been using Gammagard

sub q for 4 years at home with NO problems. For us it helps to not have the 3rd

week crash for my son. He just could not make it to the 21 days each month. His

levels stay higher and he has only had one pneumonia in the past 4 years plus a

few colds. Hang in there you are doing a GREAT job! ( My ex husband (Nervous

NED) and 18 yo daughter learned to do the sub q for my son when we were

separated due to insurance issues a couple of years ago.

BARBIE

________________________________

From: Herzberg <skgcifamily@...>

Sent: Wed, December 1, 2010 2:25:25 PM

Subject: Sticking with IVIG

Well, we thought we were going to start with IVIG and then move on to

Hizentra sub-q, but we have elected to stick with the hospital based

infusions for now. I've spent the past few weeks trying to get things set up

to do the sub-q and it's been a total pain in the rear. We have some changes

to our insurance coming as of Jan 1 and the Hizentra will switch from our

medical plan to our Rx plan. Welll, that means it will cost us more. Even

this year, all drugs that go through specialty pharmacy (including equipment

needed to do the infusion) must be paid out of pocket and then reimbursed by

the insurance. The estimate for us to pay out of pocket each month was

approx $7000+. The insurance rep said we'd be reimbursed within a month, but

then of course I'd have to buy the next round etc. Not happening. If we

stick with hospital infusions we have a $1500 cap for the whole year and

then the rest is covered at 100%. Plus, he is tolerating the gammaguard

really well with pretty much zero issues so at this point I'm feeling like

we should just leave well enough alone. I'm under a great deal of stress

right now as well and it was starting to stress me out that I was going to

be the one respsonsible for doing his infusions at home. Add to that the

head of one of our major home health agencies stated to me that they don't

even do sub-q and haven't ever used Hizentra and I was a bit worried about

really having enough support to get this started.

So, that's where we are at! I'm curious if those of you on sub-q have to

pre-fund your drugs and supplies as well?

Mom to Caelan 11

[Guest guest]

Barbie,

Well it's interesting because right now doing Gammagard in the hospital is

cheaper for the insurance and for me. It is around $3K every 3 weeks. We are

capped at $1500 out of pocket for him and already met that so we don't pay

anything at this point. The sub-q was going to be about $7500 per month

total with us paying 15% of that, but having to pre-pay the specialty

pharmacy the full amount and then waiting to get paid back. That would be

subject to a separate $2000 out of pocket max and then any medical we would

still have to meet our $1500 out of pocket and until then pay 15%. It is

weird how they do specialty pharmacy and I don't understand how they can

expect people to pre-fund that kind of money. In the future, if he continues

to do well on the Gammagard then we will see if that might be a more

reasonable option for sub-q than the Hizentra. I'm sure at some point we

will switch over, but for right now it is causing so much stress to try and

get it all figured out that I just can't take anymore.

I'm glad to hear that it's been so easy for you. It gives me hope for the

future!

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Wednesday, December 01, 2010 9:06 PM

Subject: Re: Sticking with IVIG

No we have never pre-funded any of our infusions. I think it will be just a

matter of time til your insurance wakes up to the difference in cost by

doing

subq at home and IV in a hospital. It is VERY easy to do and for us it has

been

great. I understand why you making this decision and the hope will be that

if

you ask again in a year they will have it together. We have been using

Gammagard

sub q for 4 years at home with NO problems. For us it helps to not have the

3rd

week crash for my son. He just could not make it to the 21 days each month.

His

levels stay higher and he has only had one pneumonia in the past 4 years

plus a

few colds. Hang in there you are doing a GREAT job! ( My ex husband (Nervous

NED) and 18 yo daughter learned to do the sub q for my son when we were

separated due to insurance issues a couple of years ago.

BARBIE

________________________________

From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> >

<mailto:%40>

Sent: Wed, December 1, 2010 2:25:25 PM

Subject: Sticking with IVIG

Well, we thought we were going to start with IVIG and then move on to

Hizentra sub-q, but we have elected to stick with the hospital based

infusions for now. I've spent the past few weeks trying to get things set up

to do the sub-q and it's been a total pain in the rear. We have some changes

to our insurance coming as of Jan 1 and the Hizentra will switch from our

medical plan to our Rx plan. Welll, that means it will cost us more. Even

this year, all drugs that go through specialty pharmacy (including equipment

needed to do the infusion) must be paid out of pocket and then reimbursed by

the insurance. The estimate for us to pay out of pocket each month was

approx $7000+. The insurance rep said we'd be reimbursed within a month, but

then of course I'd have to buy the next round etc. Not happening. If we

stick with hospital infusions we have a $1500 cap for the whole year and

then the rest is covered at 100%. Plus, he is tolerating the gammaguard

really well with pretty much zero issues so at this point I'm feeling like

we should just leave well enough alone. I'm under a great deal of stress

right now as well and it was starting to stress me out that I was going to

be the one respsonsible for doing his infusions at home. Add to that the

head of one of our major home health agencies stated to me that they don't

even do sub-q and haven't ever used Hizentra and I was a bit worried about

really having enough support to get this started.

So, that's where we are at! I'm curious if those of you on sub-q have to

pre-fund your drugs and supplies as well?

Mom to Caelan 11

[Guest guest]

Just keep your options open. Ours is $2k per month and we do it at home weekly.

We do not pay any copays since it is under his major medical. You will find your

way but keep learning to see what you can do to make it easier for your needs

BARBIE

________________________________

From: Herzberg <skgcifamily@...>

Sent: Thu, December 2, 2010 6:00:46 AM

Subject: RE: Sticking with IVIG

Barbie,

Well it's interesting because right now doing Gammagard in the hospital is

cheaper for the insurance and for me. It is around $3K every 3 weeks. We are

capped at $1500 out of pocket for him and already met that so we don't pay

anything at this point. The sub-q was going to be about $7500 per month

total with us paying 15% of that, but having to pre-pay the specialty

pharmacy the full amount and then waiting to get paid back. That would be

subject to a separate $2000 out of pocket max and then any medical we would

still have to meet our $1500 out of pocket and until then pay 15%. It is

weird how they do specialty pharmacy and I don't understand how they can

expect people to pre-fund that kind of money. In the future, if he continues

to do well on the Gammagard then we will see if that might be a more

reasonable option for sub-q than the Hizentra. I'm sure at some point we

will switch over, but for right now it is causing so much stress to try and

get it all figured out that I just can't take anymore.

I'm glad to hear that it's been so easy for you. It gives me hope for the

future!

_____

From: [mailto: ] On Behalf Of

Barbara Jimenez

Sent: Wednesday, December 01, 2010 9:06 PM

Subject: Re: Sticking with IVIG

No we have never pre-funded any of our infusions. I think it will be just a

matter of time til your insurance wakes up to the difference in cost by

doing

subq at home and IV in a hospital. It is VERY easy to do and for us it has

been

great. I understand why you making this decision and the hope will be that

if

you ask again in a year they will have it together. We have been using

Gammagard

sub q for 4 years at home with NO problems. For us it helps to not have the

3rd

week crash for my son. He just could not make it to the 21 days each month.

His

levels stay higher and he has only had one pneumonia in the past 4 years

plus a

few colds. Hang in there you are doing a GREAT job! ( My ex husband (Nervous

NED) and 18 yo daughter learned to do the sub q for my son when we were

separated due to insurance issues a couple of years ago.

BARBIE

________________________________

From: Herzberg <skgcifamily@... <mailto:skgcifamily%40msn.com> >

<mailto:%40>

Sent: Wed, December 1, 2010 2:25:25 PM

Subject: Sticking with IVIG

Well, we thought we were going to start with IVIG and then move on to

Hizentra sub-q, but we have elected to stick with the hospital based

infusions for now. I've spent the past few weeks trying to get things set up

to do the sub-q and it's been a total pain in the rear. We have some changes

to our insurance coming as of Jan 1 and the Hizentra will switch from our

medical plan to our Rx plan. Welll, that means it will cost us more. Even

this year, all drugs that go through specialty pharmacy (including equipment

needed to do the infusion) must be paid out of pocket and then reimbursed by

the insurance. The estimate for us to pay out of pocket each month was

approx $7000+. The insurance rep said we'd be reimbursed within a month, but

then of course I'd have to buy the next round etc. Not happening. If we

stick with hospital infusions we have a $1500 cap for the whole year and

then the rest is covered at 100%. Plus, he is tolerating the gammaguard

really well with pretty much zero issues so at this point I'm feeling like

we should just leave well enough alone. I'm under a great deal of stress

right now as well and it was starting to stress me out that I was going to

be the one respsonsible for doing his infusions at home. Add to that the

head of one of our major home health agencies stated to me that they don't

even do sub-q and haven't ever used Hizentra and I was a bit worried about

really having enough support to get this started.

So, that's where we are at! I'm curious if those of you on sub-q have to

pre-fund your drugs and supplies as well?

Mom to Caelan 11

[Guest guest]

, we go thru Acreedo, a specialty pharmacy, because Med Mutual of Ohio

makes us, ours is $1,700 a month for weekly subq, there are no upfront costs

other than our $20 co pay, it includes all the supplies, I can't imagine them

wanting over $7,000 that seems ridiculously over priced, we chose to go thru

pharmacy as opposed to putting it on medical, because it is way cheaper that

way, no deductibles, maxes, 20%'s etc... I have always known subq at home to be

cheaper, so this is interesting, good luck and keep us posted   I know it is

so overwhelming!!!

Makenzie 10

21

[Guest guest]

Have you tried checking with another specialty pharmacy? We use Nufactor and

have been very happy with them, their national in the US and bill insurance. All

I had to do was make a single call and they handled everything from contacting

the Dr to the insurance.

________________________________

From: SKGCI Family <skgcifamily@...>

Sent: Fri, December 3, 2010 6:43:45 AM

Subject: RE: sticking with IVIG

Thanks . That is part of the problem, I can't seem to get anyone nailed

down to a firm answer about anything. This year, our plan covers it under major

medical, but after the 1st of the year it switches to our pharmacy plan with a

cap of 2K. The problem is still either way they claim we have to pay the full

amount and then submit to insurance because they are telling me that the

specialty pharmacies don't bill insurance. I'm not sure if I'm getting straight

answers or not, but we were running out of time to make a decision before the

end of the year (our medical out of pocket was met already and I wanted the

equipment etc. on this years plan so it wouldn't cost any more). We felt like

since we can't get any firm answers that we didn't want to take the risk and

open ourselves up to a huge financial commitment. I just wish I could get

someone who has a clue. I spent 2.5 hours on the phone on Monday and ended up

hanging up on the last person because I was in tears and couldn't speak. I've

been navigating this stuff my son's whole life, but for some reason nobody

around here or at my insurance seems to know the answers regarding sub-q. I

guess around here it must be pretty new. Eventually, we will get it all figured

out.

I think the high cost I quoted is just for Hizentra. It's super expensive. I'm

sure if we used something else it would be much cheaper. We will look into it

down the road. Right now I'm just hoping that Caelan continues to tolerate the

Gammagard. His liver enzymes are going up, but so far we are still in an ok

range. No other side effects except the first time he had a mild fever. That is

huge because he had a huge reaction when he was little, but it was a different

brand.

Thanks for the input! I really appreciate it.

From: nalla70@...

Date: Fri, 3 Dec 2010 06:23:11 -0800

Subject: sticking with IVIG

, we go thru Acreedo, a specialty pharmacy, because Med Mutual of

Ohio makes us, ours is $1,700 a month for weekly subq, there are no upfront

costs other than our $20 co pay, it includes all the supplies, I can't imagine

them wanting over $7,000 that seems ridiculously over priced, we chose to go

thru pharmacy as opposed to putting it on medical, because it is way cheaper

that way, no deductibles, maxes, 20%'s etc... I have always known subq at home

to be cheaper, so this is interesting, good luck and keep us posted I know

it is so overwhelming!!!

Makenzie 10

21