Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I agree with Barbie, call them and get a nurse on the phone. God knows I'm on a first name basis with ours and have even gotten her AND her boss on a conf call while at the hospital getting things covered. Somethings I even get covered before its even ordered by the Dr! Ours (CCS) has been fantastic in covering stuff for both my girls, I almost consider them our primary ins because they cover so much stuff for us, all the regular ins covers is our pedi basically. ________________________________ From: Barbara Jimenez <mother5590@...> Sent: Sun, April 18, 2010 2:14:38 PM Subject: Re: Insurance 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Contact Medicaid, they can tell you who they are contracted with and I'm pretty sure all the specialty pharmacies are if you switch to SCIG. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 2:40:44 PM Subject: RE: Insurance I did call and talk to them directly and they are not contracted with my primary insurance, period. They said to go somewhere else, but somewhere else does not take my Medicaid. I'm kinda stuck. _____ From: [mailto: ] On Behalf Of Madden Sent: Sunday, April 18, 2010 2:23 PM Subject: Re: Insurance I agree with Barbie, call them and get a nurse on the phone. God knows I'm on a first name basis with ours and have even gotten her AND her boss on a conf call while at the hospital getting things covered. Somethings I even get covered before its even ordered by the Dr! Ours (CCS) has been fantastic in covering stuff for both my girls, I almost consider them our primary ins because they cover so much stuff for us, all the regular ins covers is our pedi basically. ________________________________ From: Barbara Jimenez <mother5590 (DOT) <mailto:mother5590%40> com> groups (DOT) <mailto:%40> com Sent: Sun, April 18, 2010 2:14:38 PM Subject: Re: Insurance 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@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Contact Medicaid, they can tell you who they are contracted with and I'm pretty sure all the specialty pharmacies are if you switch to SCIG. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 2:40:44 PM Subject: RE: Insurance I did call and talk to them directly and they are not contracted with my primary insurance, period. They said to go somewhere else, but somewhere else does not take my Medicaid. I'm kinda stuck. _____ From: [mailto: ] On Behalf Of Madden Sent: Sunday, April 18, 2010 2:23 PM Subject: Re: Insurance I agree with Barbie, call them and get a nurse on the phone. God knows I'm on a first name basis with ours and have even gotten her AND her boss on a conf call while at the hospital getting things covered. Somethings I even get covered before its even ordered by the Dr! Ours (CCS) has been fantastic in covering stuff for both my girls, I almost consider them our primary ins because they cover so much stuff for us, all the regular ins covers is our pedi basically. ________________________________ From: Barbara Jimenez <mother5590 (DOT) <mailto:mother5590%40> com> groups (DOT) <mailto:%40> com Sent: Sun, April 18, 2010 2:14:38 PM Subject: Re: Insurance 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@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 That's such a shame you can't find an agency that takes both! I guess the difference is that your other insurance WOULD cover through a different agency. We get our IVIG and supplies through a pharmacy that contracts with the agency. We do actually use a different agency for our other nursing and I know THAT isn't covered by BCBS but that's because it doesn't cover general home nursing - only for specific things and maybe IVIG nursing IS paid by our BCBS. Medicaid would be picking up the copays so I don't know that I would realize that. I guess your best bet would be to figure out exactly what it would be costing you each month if you had the new insurance and then just make an educated decision about whether or not the hassle of Medicaid alone is worth X amount of money every month. Good luck! From: [mailto: ] On Behalf Of Carie Sent: Sunday, April 18, 2010 5:39 PM Subject: RE: Insurance They won't pay if I have the option of going to a home care agency that does take it, and if I do that I will be forced to pick up the balance because they don't take my Medicaid at the places that take my primary insurance. Yes I am using them for doing my IVIG at home. _____ From: <mailto:%40> [mailto: <mailto:%40> ] On Behalf Of Hobbs Sent: Sunday, April 18, 2010 2:20 PM <mailto:%40> Subject: RE: Insurance 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: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Carie Sent: Sunday, April 18, 2010 5:18 PM groups (DOT) <mailto:%40> com 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) <mailto:%40> com <mailto:%40> [mailto:groups (DOT) <mailto:%40> com <mailto:%40> ] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 1:58 PM groups (DOT) <mailto:%40> com <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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 They won't pay if I have the option of going to a home care agency that does take it, and if I do that I will be forced to pick up the balance because they don't take my Medicaid at the places that take my primary insurance. Yes I am using them for doing my IVIG at home. _____ From: [mailto: ] On Behalf Of Hobbs Sent: Sunday, April 18, 2010 2:20 PM Subject: RE: Insurance 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: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Carie Sent: Sunday, April 18, 2010 5:18 PM groups (DOT) <mailto:%40> com 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) <mailto:%40> com <mailto:%40> [mailto:groups (DOT) <mailto:%40> com <mailto:%40> ] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 1:58 PM groups (DOT) <mailto:%40> com <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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I did call and talk to them directly and they are not contracted with my primary insurance, period. They said to go somewhere else, but somewhere else does not take my Medicaid. I'm kinda stuck. _____ From: [mailto: ] On Behalf Of Madden Sent: Sunday, April 18, 2010 2:23 PM Subject: Re: Insurance I agree with Barbie, call them and get a nurse on the phone. God knows I'm on a first name basis with ours and have even gotten her AND her boss on a conf call while at the hospital getting things covered. Somethings I even get covered before its even ordered by the Dr! Ours (CCS) has been fantastic in covering stuff for both my girls, I almost consider them our primary ins because they cover so much stuff for us, all the regular ins covers is our pedi basically. ________________________________ From: Barbara Jimenez <mother5590 (DOT) <mailto:mother5590%40> com> groups (DOT) <mailto:%40> com Sent: Sun, April 18, 2010 2:14:38 PM Subject: Re: Insurance 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@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I did call and talk to them directly and they are not contracted with my primary insurance, period. They said to go somewhere else, but somewhere else does not take my Medicaid. I'm kinda stuck. _____ From: [mailto: ] On Behalf Of Madden Sent: Sunday, April 18, 2010 2:23 PM Subject: Re: Insurance I agree with Barbie, call them and get a nurse on the phone. God knows I'm on a first name basis with ours and have even gotten her AND her boss on a conf call while at the hospital getting things covered. Somethings I even get covered before its even ordered by the Dr! Ours (CCS) has been fantastic in covering stuff for both my girls, I almost consider them our primary ins because they cover so much stuff for us, all the regular ins covers is our pedi basically. ________________________________ From: Barbara Jimenez <mother5590 (DOT) <mailto:mother5590%40> com> groups (DOT) <mailto:%40> com Sent: Sun, April 18, 2010 2:14:38 PM Subject: Re: Insurance 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@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 My heart is just breaking for you, because you are in such a tough an difficult position, and I can totally relate! We have a lot in common: has autism. He has had reactions to just about everything but Gammagard. We too are on COBRA And, in the last few weeks, we have switched from IVIG to Sub-Q. 1. We do Gammagard Sub-Q. There are pros/cons. The pro is that there is no side effects, the con is the volume that needs to be infused each week. As soon as it becomes available in our pharmacy, we are switching to Hizentra. Both our doc and our pharmacist say that Vivaglobin will be discontinued in the near future. 2. We also have a home health company do infusions in the home- I can not imagine life without them. A few thoughts- 1. Find out which insurances (public or otherwise) that the home health company accepts. Once you know what they will accept, then sort from there. 2. With public health insurances (such as medicare/aid) there are always waivers available. I know here in California if it would pose a health threat to the child to do infusions in the hospital (because of being around other sick children), then you can get a waiver to have them accept a home health company they previously did not accept. 3. Many agencies will not accept public insurance because the reimbursement rates are so low 4. Arizona has a Department of Developmental Disability- the purpose is to provide gap services that are related to the disability; they also can do medical care coordination. 5. There is a public health services, similar to an HMO, through the state, Healthy Families. You pay for it (no more than $60/mo) but it is a step up from public insurance, and usually have more doctors/agencies they contract with. 6. Make sure your child is on an IEP- if the child needs services to benefit from their education, the district, county or state will have to pay for some services. This is done through CRS in Arizona. 7. Through the school district, request behavior support services, to help address behaviors arising from IVIG, or switching to Sub-Q We just posted a few weeks ago, a list of things we were doing to help the transition to Sub-Q for our kids with autism. The list was pretty exhaustive- search the archives. Lastly, see if you can get a COBRA extension- depending when COBRA started, you can have/use COBRA for up to 4 years now. Good luck and feel free to email me off list. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Wow, that was a hard lesson to learn....Sorry, you guys had to go through that. $9000!!!! Horrible. What I have found is that, the best way to get ins. to reimburse/pay is to have the doc pressure them.....The doc understands the importance of time in the ET scenario and can effectively communicate this to the ins. co. The doc can now also provide to them at least 2 American journals proving the effectiveness and time sensitivity of ET. HRH > I am glad someone said there insurance covered it. We are with Aetna and > can say that was not the case. We exhausted our savings last year with MRI > and appts in Indy. That is why we are so grateful to Shriners Hospital. > They cover the cost of casting at no out of pocket to families. Also, in > hindsight we wish we would have accepted the assistance offered by > Shriners with the Mri. If we would have chose to stay in Chicago for the > MRI they negotiate with some of the Childrens hospitals to cover this for > their patients. We wanted so badly to get home and assumed it wouldn't be > that much to have it at home. $9000.00 later we have learned our lesson. > found St. Louis the same way. Since they were at St. Louis > childrens at the time rather than St. Louis Shriners where they now are, > they are still dealing with the cost of the first casting and MRI. Their > second casting and brace is being covered by Shriners. > I know insurance will sometimes cover these costs but unless you > have an exceptional policy which being in healthcare I have not > found is the case for thousands of Americans, there will be out of > pocket cost sharing as well as lifetime and yearly minimums & > maximums to consider at a non Shriners facility. I am not sure how > teaching facilitys that provide derotational casting look at this, > but that may be another option. My cousin did his residency at CHAD > in Dartmouth 4 years ago and they did not offer derotational > casting or modified Risser at that time. Shriners in Erie may be an > option. Wish I was more help. > > Sent from my iPhone > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Macey used Gammagard S/D the first year she did subq. Accredo knows how to get it (at least the one in Atlanta does). Nationally they might be able to help. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 5:23:54 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: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 2:08 PM groups (DOT) com 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: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) com [mailto:] 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 depends on the BCBS. We're with BCBS of GA and they pay for any nursing care we need. IVIG or subq. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Hobbs <hobbsfamily@...> Sent: Sun, April 18, 2010 5:19:47 PM Subject: RE: Insurance 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: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Sunday, April 18, 2010 5:18 PM groups (DOT) com 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:% 40groups. com> [mailto:groups (DOT) com <mailto:% 40groups. com> ] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 1:58 PM groups (DOT) com <mailto:% 40groups. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 16 gm of Gamma is about 4 gm/wk or 40 cc per wk. Three sites would work. We do 3 sites for 50cc. Sent on the Now Network™ from my Sprint® BlackBerry 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 I use Gammagard liquid. How does subq work? Do you have to go through a home care agency for it or not? I want to be as informed as possible when I talk to my Dr. My child gets 15 grams every fours weeks, so would he be getting a lot sub-q? _____ From: [mailto: ] On Behalf Of Ursula Holleman Sent: Sunday, April 18, 2010 4:52 PM Subject: Re: Insurance Macey used Gammagard S/D the first year she did subq. Accredo knows how to get it (at least the one in Atlanta does). Nationally they might be able to help. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com Sent: Sun, April 18, 2010 5:23:54 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: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 2:08 PM groups (DOT) com 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: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) com [mailto:] 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 You will not need a home care agency and you get trained to do the infusions at home yourself. Its not as scary as it sounds I promise:) With SCIG you will most likely will infuse 3-4 grams weekly to get the total dose every month. The exact volume you infuse will depend on the product concentration. This video seems to show a pretty good idea of what to expect during a SCIG infusion. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 5:45:59 PM Subject: RE: Insurance I use Gammagard liquid. How does subq work? Do you have to go through a home care agency for it or not? I want to be as informed as possible when I talk to my Dr. My child gets 15 grams every fours weeks, so would he be getting a lot sub-q? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 You will not need a home care agency and you get trained to do the infusions at home yourself. Its not as scary as it sounds I promise:) With SCIG you will most likely will infuse 3-4 grams weekly to get the total dose every month. The exact volume you infuse will depend on the product concentration. This video seems to show a pretty good idea of what to expect during a SCIG infusion. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 5:45:59 PM Subject: RE: Insurance I use Gammagard liquid. How does subq work? Do you have to go through a home care agency for it or not? I want to be as informed as possible when I talk to my Dr. My child gets 15 grams every fours weeks, so would he be getting a lot sub-q? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Macey was getting 30 gms IV every 3 weeks. On subq she gets 8 gms per week. 16% solution. comes out to 25 cc per site. more than you would have to do but at the upper end of site amounts. Some people do between two and four sites. Less volume per site but more sticks. sticks are no more than blood sugar or finger sticks for lab work. Your doctor can call the consulting immunologist program at the Immune Deficiency Foundation 1-800-296-4433. They can go over Subq with him/her. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 8:45:59 PM Subject: RE: Insurance I use Gammagard liquid. How does subq work? Do you have to go through a home care agency for it or not? I want to be as informed as possible when I talk to my Dr. My child gets 15 grams every fours weeks, so would he be getting a lot sub-q? _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Ursula Holleman Sent: Sunday, April 18, 2010 4:52 PM groups (DOT) com Subject: Re: Insurance Macey used Gammagard S/D the first year she did subq. Accredo knows how to get it (at least the one in Atlanta does). Nationally they might be able to help. Ursula Mom to (17) and Macey (14) Macey's Caringbridge site Macey's Blog ____________ _________ _________ __ From: Carie <itsallaboutkreed@ <mailto:itsallabout kreed%40cox. net> cox.net> groups (DOT) <mailto:% 40groups. com> com Sent: Sun, April 18, 2010 5:23:54 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: groups (DOT) com [mailto:] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 2:08 PM groups (DOT) com 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: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) com [mailto:] 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 Contact IDF tomorrow. They can get you someone to work through getting your child set up on infusions and the change of insurance issues. I understand how overwhelming it all is but there is help out there. If not let me know and I will contact NPAF and they can get you a case manager to get it set up but IDF would be the first place to start. BARBIE ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 2:40:44 PM Subject: RE: Insurance I did call and talk to them directly and they are not contracted with my primary insurance, period. They said to go somewhere else, but somewhere else does not take my Medicaid. I'm kinda stuck. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Madden Sent: Sunday, April 18, 2010 2:23 PM groups (DOT) com Subject: Re: Insurance I agree with Barbie, call them and get a nurse on the phone. God knows I'm on a first name basis with ours and have even gotten her AND her boss on a conf call while at the hospital getting things covered. Somethings I even get covered before its even ordered by the Dr! Ours (CCS) has been fantastic in covering stuff for both my girls, I almost consider them our primary ins because they cover so much stuff for us, all the regular ins covers is our pedi basically. ____________ _________ _________ __ From: Barbara Jimenez <mother5590@ . <mailto:mother5590% 40> com> groups (DOT) <mailto:% 40groups. com> com Sent: Sun, April 18, 2010 2:14:38 PM Subject: Re: Insurance 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@ <mailto:itsallabout kreed%40cox. net> cox.net> groups (DOT) <mailto:% 40groups. com> com 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:] 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 But...... the home health agency that takes the primary CANNOT legally charge you the remainder if you have Medicaid secondary. THIS I KNOW FOR A FACT !!!! BARBIE ________________________________ From: Carie <itsallaboutkreed@...> Sent: Sun, April 18, 2010 2:38:38 PM Subject: RE: Insurance They won't pay if I have the option of going to a home care agency that does take it, and if I do that I will be forced to pick up the balance because they don't take my Medicaid at the places that take my primary insurance. Yes I am using them for doing my IVIG at home. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Hobbs Sent: Sunday, April 18, 2010 2:20 PM groups (DOT) com Subject: RE: Insurance 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: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of Carie Sent: Sunday, April 18, 2010 5:18 PM groups (DOT) <mailto:% 40groups. com> com 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) <mailto:% 40groups. com> com <mailto:% 40groups. com> [mailto:@ groups. <mailto:% 40groups. com> com <mailto:% 40groups. com> ] On Behalf Of Barbara Jimenez Sent: Sunday, April 18, 2010 1:58 PM groups (DOT) <mailto:% 40groups. com> com <mailto:% 40groups. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 wow this is scary....we too are paying cobra and also have secondary state ins.......I worry about this very scenario....I hope things work out for you. valarie > > I did call and talk to them directly and they are not contracted with my > primary insurance, period. They said to go somewhere else, but somewhere > else does not take my Medicaid. I'm kinda stuck. > > > > > > _____ > > From: [mailto: ] On Behalf Of > Madden > Sent: Sunday, April 18, 2010 2:23 PM > > Subject: Re: Insurance > > > > > > I agree with Barbie, call them and get a nurse on the phone. God knows I'm > on a first name basis with ours and have even gotten her AND her boss on a > conf call while at the hospital getting things covered. Somethings I even > get covered before its even ordered by the Dr! Ours (CCS) has been fantastic > in covering stuff for both my girls, I almost consider them our primary ins > because they cover so much stuff for us, all the regular ins covers is our > pedi basically. > > ________________________________ > From: Barbara Jimenez <mother5590 (DOT) <mailto:mother5590%40> > com> > groups (DOT) <mailto:%40> com > Sent: Sun, April 18, 2010 2:14:38 PM > Subject: Re: Insurance > > 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@ <mailto:itsallaboutkreed%40cox.net> cox.net> > groups (DOT) <mailto:%40> com > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 wow this is scary....we too are paying cobra and also have secondary state ins.......I worry about this very scenario....I hope things work out for you. valarie > > I did call and talk to them directly and they are not contracted with my > primary insurance, period. They said to go somewhere else, but somewhere > else does not take my Medicaid. I'm kinda stuck. > > > > > > _____ > > From: [mailto: ] On Behalf Of > Madden > Sent: Sunday, April 18, 2010 2:23 PM > > Subject: Re: Insurance > > > > > > I agree with Barbie, call them and get a nurse on the phone. God knows I'm > on a first name basis with ours and have even gotten her AND her boss on a > conf call while at the hospital getting things covered. Somethings I even > get covered before its even ordered by the Dr! Ours (CCS) has been fantastic > in covering stuff for both my girls, I almost consider them our primary ins > because they cover so much stuff for us, all the regular ins covers is our > pedi basically. > > ________________________________ > From: Barbara Jimenez <mother5590 (DOT) <mailto:mother5590%40> > com> > groups (DOT) <mailto:%40> com > Sent: Sun, April 18, 2010 2:14:38 PM > Subject: Re: Insurance > > 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@ <mailto:itsallaboutkreed%40cox.net> cox.net> > groups (DOT) <mailto:%40> com > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 This varies state by state, but we have a Beckett application in the mail to us already for Abigail..most states have a disability medicaid waiver that will cover any disabled child, it's called something different in every state and sometimes the waiting list is long, but it goes off the child's income (usually none) and the disability, not the parents income. They don't advertise it so you have to do some research and make some calls..try the Children With Special Health Needs website or search for your state and health care for disabled children..hope this helps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: [mailto: ] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: [mailto: ] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 The ins pays the specialty pharmacy for everything and the pharmacy contracts with the local nursing agency to provide training so in a way it bypasses your ins with the nursing agency. If you want to use gammaguard just print off reliable info from the web to take to your Dr. Its really not all that complicated:) All I had to do was make a call (we went with Nufactor since thats all I had heard of and its plastered all over IG Living) and Nufactor handled everything from insurance to finding a nursing agency to getting Dr's orders for SCIG. Very easy process but it does take planning, SCIG is started 7 days after the last IVIG infusion so you want to set it up before hand so its all in place when day 7 comes. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Tue, April 20, 2010 7:57:22 AM Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: [mailto: ] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 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. Quote Link to comment Share on other sites More sharing options...
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