Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: [mailto: ] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:%40> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@...> Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@...> Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: [mailto: ] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: [mailto: ] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 One more question, why do some Dr's not have a problem with using something that is not FDA approved? My Dr is acting like it is absolutely not even open for discussion because of this. Is IDF the people he needs to talk to regarding this? I am upset he is taking away my options. There are not a lot of immunologist to switch to in town! _____ From: [mailto: ] On Behalf Of Carie Sent: Tuesday, April 20, 2010 5:39 PM Subject: RE: Insurance I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM groups (DOT) <mailto:%40> com Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 How about traveling to one? We drive 3 hours to ours, actually it would be a 3 hour drive in either direction for us but its worth it. I know some families drive even further to see a good Dr. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Tue, April 20, 2010 5:48:25 PM Subject: RE: Insurance One more question, why do some Dr's not have a problem with using something that is not FDA approved? My Dr is acting like it is absolutely not even open for discussion because of this. Is IDF the people he needs to talk to regarding this? I am upset he is taking away my options. There are not a lot of immunologist to switch to in town! _____ From: [mailto: ] On Behalf Of Carie Sent: Tuesday, April 20, 2010 5:39 PM Subject: RE: Insurance I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM groups (DOT) <mailto:%40> com Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 How about traveling to one? We drive 3 hours to ours, actually it would be a 3 hour drive in either direction for us but its worth it. I know some families drive even further to see a good Dr. ________________________________ From: Carie <itsallaboutkreed@...> Sent: Tue, April 20, 2010 5:48:25 PM Subject: RE: Insurance One more question, why do some Dr's not have a problem with using something that is not FDA approved? My Dr is acting like it is absolutely not even open for discussion because of this. Is IDF the people he needs to talk to regarding this? I am upset he is taking away my options. There are not a lot of immunologist to switch to in town! _____ From: [mailto: ] On Behalf Of Carie Sent: Tuesday, April 20, 2010 5:39 PM Subject: RE: Insurance I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: groups (DOT) <mailto:%40> com [mailto:groups (DOT) <mailto:%40> com] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM groups (DOT) <mailto:%40> com Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ________________________________ From: Carie <itsallaboutkreed@ <mailto:itsallaboutkreed%40cox.net> cox.net> groups (DOT) <mailto:%40> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 While FDA approval is important, but with your current insurance (and Immuno doc) is Gammagard on the formulary for Sub-Q? I know for us it is (United Health Care). I think this alone speaks volumes. There are often meds that are used for different purposes than approved by the FDA, because they have medicinal value to treat other symptoms. If your insurance approves Gammagard for Sub-Q then your doctor should ease off. Or, go for a second opinion to a doctor who relates more to your personal circumstances and meets your (and your child's needs). If it were us, I am not sure that I would accept an " the FDA hasn't approved it for that purpose yet " response. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 While FDA approval is important, but with your current insurance (and Immuno doc) is Gammagard on the formulary for Sub-Q? I know for us it is (United Health Care). I think this alone speaks volumes. There are often meds that are used for different purposes than approved by the FDA, because they have medicinal value to treat other symptoms. If your insurance approves Gammagard for Sub-Q then your doctor should ease off. Or, go for a second opinion to a doctor who relates more to your personal circumstances and meets your (and your child's needs). If it were us, I am not sure that I would accept an " the FDA hasn't approved it for that purpose yet " response. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Even one other immunologist that you find to do a better job meeting your needs and listening to you would be worth a try if you feel strongly about using the Gammagard. You can get your insurance to pay for it if you want a second opinion. It is required by law and I encourage everyone to get a second opinion. The only other thought I had was that I am an RN and was adamant that my son needed to have a port 11 years ago when we started with IV infusions. I could not imagine that he would do well without it. But.... we did every 3 week infusions for 6 years without but a couple of times that the starts were very difficult. ( usually when he was sick or had been on steroids for his asthma) So even though I was in the field I was thankful that our Dr. wanted us to try doing infusions without a port since in the end it was the best for my son. I would talk candidly with the doctor about your " real concerns " . If he is a good doctor he will take you seriously and help it be a win win agreement at the end of the conversation. Also, bring the magazine in to show him where you are going for information within the field. Also down load info from IDF that you feel that may be helpful about Sub Q. Your doctor must have very little experience with sub Q or none. It is a matter of comfort level for most of these guys as well as a concern about using off label uses for meds since he possibly could be sued for using an non FDA approved med for Sub Q. It has been an issue for years. The interesting things is that Viva has only been around for a few years and Gamma gard for MUCH longer and has been used in Europe for years. Vivaglobin has worked well for many people so it is hard to know how your son would respond. BARBIE ________________________________ From: Madden <bluetaelon@...> Sent: Tue, April 20, 2010 5:58:54 PM Subject: Re: Insurance How about traveling to one? We drive 3 hours to ours, actually it would be a 3 hour drive in either direction for us but its worth it. I know some families drive even further to see a good Dr. ____________ _________ _________ __ From: Carie <itsallaboutkreed@ cox.net> groups (DOT) com Sent: Tue, April 20, 2010 5:48:25 PM Subject: RE: Insurance One more question, why do some Dr's not have a problem with using something that is not FDA approved? My Dr is acting like it is absolutely not even open for discussion because of this. Is IDF the people he needs to talk to regarding this? I am upset he is taking away my options. There are not a lot of immunologist to switch to in town! _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 5:39 PM groups (DOT) com Subject: RE: Insurance I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM groups (DOT) <mailto:% 40groups. com> com Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ____________ _________ _________ __ From: Carie <itsallaboutkreed@ <mailto:itsallabout kreed%40cox. net> cox.net> groups (DOT) <mailto:% 40groups. com> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 Even one other immunologist that you find to do a better job meeting your needs and listening to you would be worth a try if you feel strongly about using the Gammagard. You can get your insurance to pay for it if you want a second opinion. It is required by law and I encourage everyone to get a second opinion. The only other thought I had was that I am an RN and was adamant that my son needed to have a port 11 years ago when we started with IV infusions. I could not imagine that he would do well without it. But.... we did every 3 week infusions for 6 years without but a couple of times that the starts were very difficult. ( usually when he was sick or had been on steroids for his asthma) So even though I was in the field I was thankful that our Dr. wanted us to try doing infusions without a port since in the end it was the best for my son. I would talk candidly with the doctor about your " real concerns " . If he is a good doctor he will take you seriously and help it be a win win agreement at the end of the conversation. Also, bring the magazine in to show him where you are going for information within the field. Also down load info from IDF that you feel that may be helpful about Sub Q. Your doctor must have very little experience with sub Q or none. It is a matter of comfort level for most of these guys as well as a concern about using off label uses for meds since he possibly could be sued for using an non FDA approved med for Sub Q. It has been an issue for years. The interesting things is that Viva has only been around for a few years and Gamma gard for MUCH longer and has been used in Europe for years. Vivaglobin has worked well for many people so it is hard to know how your son would respond. BARBIE ________________________________ From: Madden <bluetaelon@...> Sent: Tue, April 20, 2010 5:58:54 PM Subject: Re: Insurance How about traveling to one? We drive 3 hours to ours, actually it would be a 3 hour drive in either direction for us but its worth it. I know some families drive even further to see a good Dr. ____________ _________ _________ __ From: Carie <itsallaboutkreed@ cox.net> groups (DOT) com Sent: Tue, April 20, 2010 5:48:25 PM Subject: RE: Insurance One more question, why do some Dr's not have a problem with using something that is not FDA approved? My Dr is acting like it is absolutely not even open for discussion because of this. Is IDF the people he needs to talk to regarding this? I am upset he is taking away my options. There are not a lot of immunologist to switch to in town! _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 5:39 PM groups (DOT) com Subject: RE: Insurance I will take Ig living with me, but would you let me know why? Am I supposed to be showing the Dr something in it in particular? Thank you for your reply, it was helpful, and calmed me down! _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of Barbara Jimenez Sent: Tuesday, April 20, 2010 5:22 PM groups (DOT) <mailto:% 40groups. com> com Subject: Re: Insurance Hello Carie, I can understand your frustration. But... keep a couple of things in mind. 1st. the person you talked to really had NO say in what happens to your son. She may not even be an RN or someone with any specific knowledge about this issue. She sounds very ignorant. I would encourage you to take the Ig Living magazine with you and to talk to the Dr. directly. He has a responsibility to discuss this with you and to help you make the right choices for your son. Gammagard is being used all over the country for sub Q. I lived in Oklahoma for the past 3 years and they refused to use Viva because of the expense. I live in WA state now and we are still using Gammagard. In my son's case he did not have IgA so it was a matter of safety but for us it has worked great. With the problems getting Viva being imminent it may make it easier for you to get the Gammagard approved. Just go in with LOTS of questions written down and ask him to contact IDF prior to making a final decision. He has a responsibility to explore it with you. Forget the nurse she sounds ignorant and irresponsible in her responses. This is NOT a chat room but a group of over 100 families that are LIVING with the ins and outs of immune deficiency in children. If nothing else the topics we discuss are an excellent source to look at what is specifically important for these kids in the field. We see the good, bad and the ugly. What you are doing is advocating for your child, if you do not do it NO ONE else will. They may not agree with you but you have the right to ask the questions and have them answered with references. As far as the insurance I do not think you will find in MAJOR problems with them except getting into the system and finding all of your resources. It will take time. We had several insurances in the past and finally stayed with Medicaid only since it was taking care of his needs. I do not find it any harder to deal with than " other " programs except that I have RECOURSE since it is a Federal/State program. It is harder to hold private insurances accountable to the law. ( my opinion) ____________ _________ _________ __ From: Carie <itsallaboutkreed@ <mailto:itsallabout kreed%40cox. net> cox.net> groups (DOT) <mailto:% 40groups. com> com Sent: Tue, April 20, 2010 4:48:54 PM Subject: RE: Insurance I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 My son is 18. He did ONLY Gammagard S/D for 8 yrs. of doing IVIG....He was switched to Gammagard Liquid, but suffered 3 bouts of Aseptic menegitis before the Hspital pharmacy let us(mom & Blake) & Blake's Dr. know it was changed....they admitted the change after Blake's 3rd time in the hospital becuse of the AM.2.5 yrs. ago Blake was swithched to Sub-Q after he nearly died from DIC. Which ws brought on by having a central line in his chest(he had had one since the age of 3). We went with VIVA..... Blake IS one of the noted & documented cases of Neuro issues as well as Anaphalactic reactions... Blake's Immunologist as well as his Pediatrician(Who by the way was/is the only Pediatrician in our area to even be aware of Sub-Q...she is the first trained Peds. in Sub-Q IG Therapy), both we willing to go to bat for Blake & get his Gammagard S/D for him to use for sub-q. Blake has NO IgA and now has the ANti IgA Antibody. Both gave to the FDA what they called a Plea of Medical Mercy for Blake. The Baxter Company Dr. also backed up Blake's case..In 2 weeks Blake was granted the Plea & we started Gammagrd S/D for sub-q & have not had to look back....it i often said " If it's not broken, don't fix it " in Blake's case...It WAS Broken & It got fixed.  I Can on say it is this way for everyone, just our case worked the way it has. I would do it aain no matter what it takes to he,p Blake have a greater chance of survival......  , mom to Blake 18 severe Combined Immunodeficiencywith Complete T-Cell Dysfunction http://www.caringbridge.org/visit/thetalesofblake " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: Carie <itsallaboutkreed@...> Subject: RE: Insurance Date: Tuesday, April 20, 2010, 7:48 PM  I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2010 Report Share Posted April 20, 2010 My son is 18. He did ONLY Gammagard S/D for 8 yrs. of doing IVIG....He was switched to Gammagard Liquid, but suffered 3 bouts of Aseptic menegitis before the Hspital pharmacy let us(mom & Blake) & Blake's Dr. know it was changed....they admitted the change after Blake's 3rd time in the hospital becuse of the AM.2.5 yrs. ago Blake was swithched to Sub-Q after he nearly died from DIC. Which ws brought on by having a central line in his chest(he had had one since the age of 3). We went with VIVA..... Blake IS one of the noted & documented cases of Neuro issues as well as Anaphalactic reactions... Blake's Immunologist as well as his Pediatrician(Who by the way was/is the only Pediatrician in our area to even be aware of Sub-Q...she is the first trained Peds. in Sub-Q IG Therapy), both we willing to go to bat for Blake & get his Gammagard S/D for him to use for sub-q. Blake has NO IgA and now has the ANti IgA Antibody. Both gave to the FDA what they called a Plea of Medical Mercy for Blake. The Baxter Company Dr. also backed up Blake's case..In 2 weeks Blake was granted the Plea & we started Gammagrd S/D for sub-q & have not had to look back....it i often said " If it's not broken, don't fix it " in Blake's case...It WAS Broken & It got fixed.  I Can on say it is this way for everyone, just our case worked the way it has. I would do it aain no matter what it takes to he,p Blake have a greater chance of survival......  , mom to Blake 18 severe Combined Immunodeficiencywith Complete T-Cell Dysfunction http://www.caringbridge.org/visit/thetalesofblake " Children are like butterflies in the wind. Some fly higher than others, BUT each one flies the best they can!!!! " From: Carie <itsallaboutkreed@...> Subject: RE: Insurance Date: Tuesday, April 20, 2010, 7:48 PM  I just talked to my Immunologist IVIG nurse. I wanted to ask him what he thought of my options and get a feel for what the Dr would say to me tomorrow so I could go in more prepared. I really would be more then happy to consider SCIG but my Dr's office is 100% opposed to using Gammagard liquid for it due to it not being FDA approved. I asked if they would speak to IDF and get information and they said absolutely not since it is not FDA approved. My child has had severe reactions to any other brand but Gammagard. He does not have even one reaction to it at all. I am not willing to put him through a " trial " of Viva and get the same bad reaction. I told the nurse some reactions I had heard about with Viva and the nurse told me they are untrue, and if I am hearing this through a " chat " room then to not believe anything they are saying. Truly, I hate when a Dr. office treats me this way, like I am an idiot, and can't think for myself and that they know better for my child. I am so frustrated, and am not looking forward to going into my appt tomorrow. It looks like my only option is only having state insurance for my son, and continuing with IVIG infusions through my current Home agency because no one is capable of being open minded. I would like to have Medicaid not be my son's primary and only insurance, but I feel like I am being forced to make this decision. Thank you all for all of your information it has been so helpful, and I appreciate it so much. By the way I did not name the group or names or anything to my nurse, I only brought up reactions ect that I had heard about. _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of Carie Sent: Tuesday, April 20, 2010 7:57 AM groups (DOT) com Subject: RE: Insurance Who does the insurance pay for SCIG? Is it a specialty pharmacy? What about learning how to do it, doesn't your health home care agency teach you how? What if I do not have them anymore due to my insurance ending with them May 1st? I go to my immunologist tomorrow and want to be informed and prepared when I talk to him about my options, which don't seem to promising at this point! In the past he would said using Gammagard for SCIG was not even an option for him, so I feel kind of out of options. I feel like my options are to only have Medicaid and to not put my child on our new insurance. I really hate to do this, but it is the only way I am guaranteed to keep my home agency and my brand of product for my son. Why does everything have to always be so difficult? _____ From: groups (DOT) <mailto:% 40groups. com> com [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of carievercelli Sent: Sunday, April 18, 2010 1:25 PM groups (DOT) <mailto:% 40groups. com> com Subject: Insurance I do not know what to do. We lose our cobra insurance in a couple of weeks, and will be left with only our state insurance. We have an opportunity through my husbands work to get new insurance, but no home care angency's take both the new insurance and my secondary state insurance. If I don't put him on our new insurance then I can use our current home agency of 3 years, but it is a scary thought to only have medicaid for him, and not two insurances for him like we have always had. If we put him on our new insurance then it will be considered our primary insurance and not one home care agency takes it and also our secondary insurance so we would be forced to cover the rest. Did all that make sense? We get IVIG every month and could never afford to pay the rest anyway. I just do not know what to do. I am assuming that the hospitals take both insurances, but we used to do our infusions at the hospital and it was nightmarish! My son has a metabolic disorder also, and is nonverbal with autism, and he refuses to eat when we go to the hospital and his blood sugar drops and they also can never get his vein (he is a hard stick), and it takes 8 hours compared to 1 1/2 when we do it at home. It really is very stressful for him to not have it at home. They also will not guarentee he will get his brand of IVIG that he needs, and he has had severe reactions to other brands, so this is not even an option for us. Any ideas? We have to make a decision by the end of the month. Thanks Carie mom to Kreed 12 CVID, SCAD, hypothyroidism, epilepsy, colitis, gastritis, autism, possible NIPBL, and mito. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 , May I ask what kind of neuro issue did he have? Janet, mom to Brittany age 19, CVID, Uriticaria & Angioedema, Vitamin D Def, Secondary Hyperparathyroidism Blake IS one of the noted & documented cases of Neuro issues Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 What do you mean 3 Ud studies? What's a study?Sent from my iPhoneOn Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> wrote: That is correct. Insurance companies require 3 Us studies to be done before they will start to cover it under mehta casting. Until then risser casting must be used. Jenn Mommy to cole and max Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 Hello! Sierra is in her 3rd Mehta Cast! BCBS of Alabama has payed for everything 100% including the Mehta cast! However, they coverage of the code using "the manipulation of her spine". I have been in the appeals process with them since April. Dr. K sent in all her medical record & a letter stating that unless casted it would case BCBS way more down the line. He also put in the letter showing how Sierra's degree of curve has went from 34 degrees down to 17 in cast! I found out Friday that BCBS of Alabama approved our appeal & have agreed to pay 100%. We ate thrilled! With the help of Dr. & his letter & also my letter all helped in the process! Just wanted to shareKristi Mommy to Sierra 16 mo. 3rd cast 34 degrees down to 17 in cast.Sent From Kristi's i-PhoneOn Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> wrote: That is correct. Insurance companies require 3 Us studies to be done before they will start to cover it under mehta casting. Until then risser casting must be used. Jenn Mommy to cole and max Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 So happy to hear that you were able to get this taken care of and it's fully covered! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: Kristi <kristij@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Mon, August 23, 2010 9:47:14 AMSubject: Re: INsurance Hello! Sierra is in her 3rd Mehta Cast! BCBS of Alabama has payed for everything 100% including the Mehta cast! However, they coverage of the code using "the manipulation of her spine". I have been in the appeals process with them since April. Dr. K sent in all her medical record & a letter stating that unless casted it would case BCBS way more down the line. He also put in the letter showing how Sierra's degree of curve has went from 34 degrees down to 17 in cast! I found out Friday that BCBS of Alabama approved our appeal & have agreed to pay 100%. We ate thrilled! With the help of Dr. & his letter & also my letter all helped in the process! Just wanted to shareKristi Mommy to Sierra 16 mo. 3rd cast 34 degrees down to 17 in cast.Sent From Kristi's i-PhoneOn Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> wrote: That is correct. Insurance companies require 3 Us studies to be done before they will start to cover it under mehta casting. Until then risser casting must be used. Jenn Mommy to cole and max Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2010 Report Share Posted August 23, 2010 Thanks for sharing that Kristi. This is a great example of the doc going to bat! Excellent. > Hello! Sierra is in her 3rd Mehta Cast! BCBS of Alabama has payed for > everything 100% including the Mehta cast! However, they coverage of the > code using " the manipulation of her spine " . I have been in the appeals > process with them since April. Dr. K sent in all her medical record & a > letter stating that unless casted it would case BCBS way more down the > line. He also put in the letter showing how Sierra's degree of curve has > went from 34 degrees down to 17 in cast! I found out Friday that BCBS of > Alabama approved our appeal & have agreed to pay 100%. We ate thrilled! > With the help of Dr. & his letter & also my letter all helped in the > process! Just wanted to share > Kristi Mommy to Sierra 16 mo. 3rd cast 34 degrees down to 17 in cast. > > Sent From Kristi's i-Phone > > On Aug 22, 2010, at 8:02 PM, Leggett <jennifer.leggett@...> > wrote: > >> That is correct. Insurance companies require 3 Us studies to be done >> before they will start to cover it under mehta casting. Until then >> risser casting must be used. >> >> Jenn >> Mommy to cole and max >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2010 Report Share Posted November 23, 2010 Just take Medicare Part D. I personally chose an advantage plan which was more expensive but my prescription costs are high and I need complete freedom to see any doctor I want.You can compare Medicare Part D programs in your area:http://www.medicare.gov/medicarereform/drugbenefit.asp Regards, VergelPoWeRUSA.orgFrom: King <ringaking@...> Sent: Tue, November 23, 2010 7:35:56 PMSubject: Insurance I have been on my husbands insurance but he will be laid off at the end of the year. I am trying to decide which insurance to go with. I am on disability & 61 yrs old. United? Humana? AARP? And if I go with one of these & my HIV drugs are Tier 4 do I also take Part D on Medicare?? Confused in Atlanta area ------------------------------------Welcome to our group!If you received this email from someone who forwarded it to you and would like to join this group, send a blank email to -subscribe and you will get an email with instructions to follow.You can chose to receive single emails or a daily digest (collection of emails). You can post pictures, images, attach files and search by keyword old postings in the group.For those of you who are members already and want to switch from single emails to digest or vice versa, visit www., click on , then on "edit my membership" and go down to your selection. The list administrator does not process any requests, so this is a do-it-yourself easy process ! :)Thanks for joining. You will learn and share a lot in this group!NOTE: I moderate, approve or disapprove emails before they are posted. Please follow the guidelines shown in the homepage. I will not allow rudeness, sexually explicit material, attacks, and anyone who does not follow the rules. If you are not OK with this, please do not join the group. Forward this email to anyone who may benefit from this information! Thanks!In Health, Vergel (PoWeRTX@...)List Founder and Moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2012 Report Share Posted March 16, 2012 Beyond PIP, this is what personal health is up to: http://www.propublica.org/article/senate-bill-could-roll-back-consumers-health-insurance-savings Seitz, DC Tuality Physicians 730-D SE Oak St Hillsboro, OR 97123 (503)640-3724 Quote Link to comment Share on other sites More sharing options...
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